Have you heard of Ehlers Danlos Syndrome? Troubling YouTube channels

[Ayearofmad]

I have this condition and it’s really painful and causes a lot of different and unpleasant problems. Looking at YouTube channels by people with it is really disturbing. Most seem to be teens and young adult women. Most are in the US and nearly all of them have supportive braces on every limb and elaborate metal splints on every finger. A fair amount have feeding tubes and some stomas. Many are in wheelchairs, carry loads of medical kit round with them and use all sorts of aids. Lots seem to be in hospital on a regular basis having major operations and have just about every known manifestation of the syndrome.

I know it affects everyone differently and there are lots of different types of it but in real Life I don’t know anyone with it who has the sheer amount of medical intervention as the people on YouTube channels have. As I am getting older it’s noticeable more painful - degenerative changes throughout spine/hips, difficulty regulating body temperature, teeth coming loose, more dislocations, severe constipation and hiatus hernia etc but no one in rheumatology, physio, OT, orthopaedics or gastroenterology have ever encouraged wearing cervical collars, braces, ring splints, having every troublesome joint pinned . I do have a lot of painkillers and wear supports when I have particular problems with injury or tendonitis etc but not all the time. And I may need an operation to fuse one joint that is dislocating regularly but I’m older and so that’s not entirely surprising.

There seem to be so many YouTube’s making EDS into a glamorised, hyper medicalised condition. I’m in my 60s and haven’t come across anyone with EDS in real life like these girls/women. I think it’s so weird and would be so scary for anyone who has had a recent diagnosis to watch their videos . It’s like their whole identity is having the worst possible case of it as possible. I’m not saying any condition should be trivialised but my god these women seem to be relishing every intervention. It’s a bit like sites that encourage people with eating disorders to become even more ill. Is there anything that can be done ie reporting YouTube videos?

I have EDS.

At the moment I have to use crutches or a rollator to walk outside. I also have to use wrist splints and ring splints when those parts of my body are unstable.

Recently my collarbone and neck are becoming less stable, which is scary.

I've had periods in my life when I've been able to be more active. Recently something has gone wrong with the nerves in my body. Sadly that can then cascade (as it has done with me) into being less mobile/strong and joints more unstable.

I'm glad your EDS isn't too bad. It does vary widely though. Especially as there are different types, some of which are life threatening. Don't assume it's a mental health issue

Not really my area of expertise but I saw this thread and it made me think of this documentary, which I watched recently. It is about chronically ill influencers and online communities that have sprung up dedicated to trying to root out “fakers”. It was very interesting and touched on some of the things you raised, as well as the damaging effect of online sleuths trying to “out” people as fakers.

www.bbc.co.uk/programmes/p09r3w40

I have hEDS and (suspected but not formally diagnosed) POTS.

I also have jaw / dental issues, bruise easily and had a hip replacement 5 years ago (I'm 42 now) after being born with dislocated hips.

I'm definitely on the milder end of symptoms than most and manage to work full time (and sometimes do crazy things outside of work - long distance cycling being main one).

It very definitely is a sliding scale of symptoms but I would never use YouTube for medical type stuff. It can be worse than Dr Google.

@MadameMinimes, I had no idea that ‘faking it’ was a thing. I mean I know in any online arena there will always be attention seekers/trolls, but I had absolutely no idea there were ‘influencers’ faking it for potential gain. That’s awful.

I also loathe the health/mh competitiveness, having seen it time and again, starting with when I was seeking support after ds1 was diagnosed with ASD. It’s what caused me to step back and start avoiding social media ‘support’ groups and I have only recently ventured back to a very safe one, since having to learn very quickly how to get help for and support ds2. I did go back to an old group to begin with, but if anything it had got worse.

As @ChronicallyMe said though, I can see poor and inconsistent levels of care/support from professionals at the root of it. If you have to fight for care, it can be hard to handle when you hear of others getting treatment/support quickly and easily and often in the UK it’s down to pure luck and which doctor you get referred to. Then of course, if you are a parent and fight too hard, you start to be perceived as the problem and that’s a road no-one wants to go down. I am very grateful we have never had to deal with that and that we have been, for the most part, listened to and treated with respect by the majority of professionals we’ve seen over the years.

There’s an article about it here.
www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry

It’s complex though, because true “fakers” are really rare. Most of these influencers really are ill. Some may be exaggerating, but lots of others are genuinely experiencing all of the symptoms that they say they are and being treated with suspicion and in some cases being harassed online. It really is worth a watch.

I was diagnosed last year aged 49. It explained my over-familiarity with orthopaedic surgeons and lifelong klutziness, aversion to tropical holidays, etc… (I live in Australia and the climate here is similar to Florida.) I have a leaky, bicuspid (instead of tricuspid) aortic valve that will need replacing in the next ten years and a tendency to faint like a heroine in a Victorian Era novel whose corset is too tightly laced. There are a slew of other bits involving digestion, periods, migraines, Raynaud’s and more, but you know the story… Now if I was one of those Americans, I’d probably have a YouTube channel and tell everyone every detail of my life, assuming that people give a shit, but I’m not. I’m too busy walking around living my life like a normal person. (Without the fancy finger jewellery - although I am not averse to aquamarines!!!)
My kids hearts are all good. One DD’s quite clicky. My DS can do the “Namaste” pose with his hands behind his back and touch the back of his head. (Barf - I wish he wouldn’t!) DD1 has Raynaud’s also. Their hearts are all good though! 😃
Now.. as we were saying… Those American YouTube Videos… BATSHIT!!!
There are 11 known subtypes of EDS and the people that really “get into it” online are generally people with H-EDS, which is the one type for which has no genetic test. (This is why you have to hear every excruciating detail of the trials and tribulations of their EVENTUAL diagnosis.) I am not trying to say that most (if not all) don’t genuinely have it, but how much it affects them MAY be a little bit of a lifestyle choice, too. Especially of their US insurance is going to pay their rent and bills, etc. (Never going to happen here in Aus. Nobody cares.)

@ChronicallyMe thank you so much for your open and honest post. I also have EDS, PoTS and just going through diagnosis for MCAS. At my recent Echo, it showed Tricuspid valve regurgitation. The report was sent through to Rheumatology, and I was contacted by phone with the results. It wasn't my usual consultant and the follow up letter which I got 2 weeks ago said the Echo 'didn't how anything too worry about' I did some research on NHS website and it says it can lead to Atrial fibrillation. My mother and both her brothers have this. So I've just put a call in to Rheumatology nurse to ask for a copy of the Echo so I can investigate furher.

Me, dh and the dc (5 of them) all have HEDS. 2 of the dc are part time wheelchair users. Dh and 4 of the dc have insoles in their shoes. 2 have mild gastric issues.

I find the people with severe problems tend to be more vocal about it on social media. I can understand that, it's easy for something like that to become all consuming when it's the biggest thing in your life. A bit like when you are pregnant or getting married. I found during lockdown when I was struggling to get out with all the dc in tow, going to the hospital appointments felt like a big event and it was a treat to escape the house, talk to other humans and get something from Costa on the way out. Thank goodness we were able to do loads of fun things this summer and the hospital appointments are now back to being boring but necessary instead of the highlight of the week.

[quote RainbowZebraWarrior]@ChronicallyMe thank you so much for your open and honest post. I also have EDS, PoTS and just going through diagnosis for MCAS. At my recent Echo, it showed Tricuspid valve regurgitation. The report was sent through to Rheumatology, and I was contacted by phone with the results. It wasn't my usual consultant and the follow up letter which I got 2 weeks ago said the Echo 'didn't how anything too worry about' I did some research on NHS website and it says it can lead to Atrial fibrillation. My mother and both her brothers have this. So I've just put a call in to Rheumatology nurse to ask for a copy of the Echo so I can investigate furher.[/quote]
My Mum developed AF as the result of a valve leak, so definitely follow that up.

She also has MCAS, but local Immunology had no idea what to do with her and didn’t want to find out, so have just left her to it. Impossible to get out of area referrals and she doesn’t want any more referrals anyway, as she’s just sick and tired of endless useless appointments and no useful outcomes. She reckons, having managed on her own this long, she is better off without “keeping on being messed about by useless doctors”! I can totally see her point, but it’s very hard to see her struggling so much every day.

I have Marfans which is the same family as EDS. I’m 36 and only now starting to really suffer, I’ve been incredibly fit and healthy up until now. Both my hands have very quickly started clawing up, I’m waiting to see my consultant but staying positive.

There’s definitely a lot of people who seem to have taken it on as an identity (cough cough Jameela Jamil cough cough) which is pretty insulting really.

Im sorry so many pp‘s are so severely affected and/or have family who are. I’m really not trying to dismiss the fact that all the various manifestations aren’t real or exaggerated. I’ve had years of being dismissed, misdiagnosed and not given vaguely adequate pain relief.

It’s the phenomenon of these young girls/women in the USA who are undergoing masses of surgeries, blogging every single aspect of every procedure from their hospital beds that is troubling. There’s a certain glamourising illness rather like how consumption was in the past with wan, fragile but brave women fading away in novels and portraits.

I thing videos can be really helpful in enabling people to find out more and get a diagnoses and things that can help. From what pp‘s are saying on here there is so much lack of basic knowledge of the condition by HCPs you would expect to know more. I was assessed by the pain clinic recently and asked which areas were a problem - I started at the neck and worked down and then went onto bladder and bowel problems. The woman on the phone asked if I had a diagnosis for all these problems and I told her it was a genetic soft tissue condition and what it’s called. She then asked how long I’d had it for. It was difficult not to be sarcastic at that point. The rheumatology department also seem to contradict themselves as to what to do about some issues so there’s clearly a lack of consistency throughout the NHS.

You end up having to try keep ahead of the Research findings and advocate for yourself which can end up making you seem cocky and demanding. Not ideal. Getting a diagnosis in the UK is so hard and it shouldn’t be. We don’t want people not getting help as soon as possible in life so they can protect their skin and joints and are monitored carefully. You shouldn’t end up being in your 50s and getting diagnosed by chance. Neither should medics be sticking feeding tubes, stomas, catheters, Ports into people without a damn good reason and telling them to wear a neck brace 24/7 so their muscles atrophy. There’s a balance between some of these youtubers glamourising and showing off all there medical accessories as if they’re the latest gucci handbag and making useful information accessible to laypeople and HCPs.

I do sometimes wonder if some people just want to remind their friends/family/total strangers that they are still ill. I remember when my 8 year old was born prematurely with eds and other health issues. For the first month or so people I vaguely knew would stop me in the street and ask how ds was. All the mum's from school signed a card for us and we were offered help with childcare. My nan kept bringing round cake, it was the only time I'd ever had more cake than we could eat .

Anyway these things gradually stopped but I would sometimes miss those days when I was trying to juggle 2 dc on the children's ward or sat with my toddler having a general anaesthetic while hoping that my baby was asleep in his pram in the anaesthetic room because of natural causes and not because he'd got a whiff of anaesthetic gas when my toddler was thrashing around. I remember feeling a bit jealous of the parents of the children in hospital for tonsils or appendix surgery who were there with their partners and had other family members coming to visit.

So I can see why people with chronic illnesses might be posting about their medical problems from their hospital beds and desperately seeking attention.

It's concerning that some private Drs are encouraging patients to have not strictly necessary surgery to make more money for themselves. I know from various forums and a friend who has lived in usa and England that many people in America will think it's normal to get a 2nd or 3rd opinion from Drs far enough away to involve flights and overnight stays. I know my friend was shocked when she came to England and was expected to carry on doing physio exercises at home with weekly input from the physio. She was used to children with disabilities getting physio 3 times a week long term.

A similar thing is happening with DID on TikTok, every other 13 year old is claiming to have 100+ alters and be able to 'switch' (change which personality is controlling the body) on command. Load of shite and just makes it harder for the legit cases.

There have always been attention seeking fakers among older children/young teens. When I was young I remember everyone was putting an un bent paperclip in their mouths and pretending they had braces or buying a cheap ring from Argos and saying they were engaged. It must be a million times worse now we have the internet and they are trying to get attention from more people.

MadameMinimes that is such an interesting article - the concept of munchausens by internet is what some of these EDS youtubers come across like. And they are doing such a diservice to everyone struggling to get a proper diagnosis and appropriate management . As well as scaring newly diagnosed people witless in the process. The videos I’ve seen are pretty dramatic with big ups and downs with things blocking or failing . These might well be really happening what with the poor healing and often atypical internal organ anatomy and function but they come across as not so much to help others as to get as much sympathy and as big a fanbase as possible and getting to be seen as incredibly heroic in the process and it really gets to me for some reason.

@Muthapuppa thank you so much for the advice. I've been so close to giving up and just managing it all myself, but my OT said I really needed to apply for PIP (so I have, with their backing as I was struggling financially after having to give up both of my very physical jobs, and now only work part time for myself) As a result, no matter how exhausting it is pushing for other issues to be addressed I need to keep on. Because if I don't, the PIP people won't believe my symptoms. They seem so focused on medical support. It's a minefield, as I'm sure you know. Been so close to giving up many times. Weirdly, I'm also doing it for my Mum as she feels so bad watching me struggle and she has cancer so I don't like to burden her.

@Ayearofmad I absolutely get what you are saying, and did from your first post. I hope others understand now since your latest post that you weren't trying to decry the struggles of others with this wide ranging condition. I thank you again for your thread, as it really has highlighted quite a few issues regarding the struggle and length of time to diagnosis and inconsistencies among healthcare professionals.

Finally, hugs and to you all.

Unfortunately I've noticed the same with other illnesses too. I call it over intervention. I'm not belittling any condition or saying that medical interventions are never necessary but sometimes you need to balance the side effects with potential benefits. In addition I've seen conditions almost glamorised, so odd.

I have 2 friends with EDS and they live quite normal lives but deal with pain and digestive issues

I can totally understand why it would bother you, OP. Ultimately, if their medical interventions are unnecessary or they are inducing symptoms, they will be damaging their health in the process and risking their safety. That’s a sign to me that they are probably not mentally well, rather than cynically trying to exploit people. I can see how people get suckered into this sort of thing because it makes them feel loved and cared about. It’s quite sad really. Like you say though, terrifying for newly diagnosed people who think that is the norm and upsetting for those suffering with the illness.

[quote RainbowZebraWarrior]@Muthapuppa thank you so much for the advice. I've been so close to giving up and just managing it all myself, but my OT said I really needed to apply for PIP (so I have, with their backing as I was struggling financially after having to give up both of my very physical jobs, and now only work part time for myself) As a result, no matter how exhausting it is pushing for other issues to be addressed I need to keep on. Because if I don't, the PIP people won't believe my symptoms. They seem so focused on medical support. It's a minefield, as I'm sure you know. Been so close to giving up many times. Weirdly, I'm also doing it for my Mum as she feels so bad watching me struggle and she has cancer so I don't like to burden her.

@Ayearofmad I absolutely get what you are saying, and did from your first post. I hope others understand now since your latest post that you weren't trying to decry the struggles of others with this wide ranging condition. I thank you again for your thread, as it really has highlighted quite a few issues regarding the struggle and length of time to diagnosis and inconsistencies among healthcare professionals.

Finally, hugs and to you all.[/quote]
@RainbowZebraWarrior I never had the strength to apply for DLA/PIP for my dcs, let alone for myself until recently. With my eldest almost 20 now, we kept finding he couldn’t access certain types of support without having a PIP award. The application process is brutal. I paid a well-known charity to help and their contribution was truly dire, so I had to start again and do it myself. I needed to do it in bitesize pieces and had to have two deadline extensions, as the process itself made me ill. Finally got it in on time a couple of weeks ago, now we wait I suppose. I am expecting to have to appeal, despite supplying extensive evidence which I carefully cross referenced to every answer. I also need to do it for ds2, but can’t face going through that again any time soon.

@Ayearofmad, thank you for your latest posts. I hear what you are saying.

I think it would be significantly harder to have multiple, unnecessary interventions in the UK than it is in the US, partly because the NHS simply doesn’t have the resources, but also because even private medicine is more tightly regulated and it’s often the same doctors you see on the NHS anyway. Then there is the cost and the fact that health insurance is expensive and not very common. Also, most health insurance in the UK covers diagnosis but not continuing care. In my experience, EDS patients tend to go private for one appointment and then get transferred onto the doctor’s NHS list.

I was advised to wear a neck brace 24/7 for months after my first neck injury aged 17. Same advice continued every time the problem happened again (so at least a few times a year for months at a time). It wasn’t until I was mid 20s that NHS advice changed their advice to be against wearing collars and by then my neck muscles were ridiculously weak. I believe the rubbish advice I had early on caused my neck to become even more unstable, resulting in the more severe issues I have now. There are exceptions, eg people with severe CCI and Chiari, but very few people should be wearing a collar 24/7.

We have found NHS Orthopaedics still tend to either panic and say they can’t help or come up with treatment plans that are not advisable for people with hypermobile joints. In 2019, an orthopaedic surgeon from the local fracture clinic told me to keep a leg brace on for months after a knee dislocation. (Weeks in a cricket brace, followed by months in an articulated brace.) I will be forever grateful to the EDS aware physio I was seeing for something else at the time, who contested the advice and helped me with active rehabilitation. I did use the brace, but appropriately, alongside specific physio rehabilitation. I dread to think what state I would have been in if I had just blindly followed the Ortho’s advice.

Same with orthopaedic surgery, NHS/NICE guidelines are to avoid it if at all possible in EDS patients and use only when all other options have been tried. Some people seem to think that’s purely down to cost, but the reality is there is a really high failure rate for orthopaedic surgery carried out on EDS patients. I think in America they move to surgical options much sooner.

Surely if they are having stomata and feeding tubes it can’t be all faking?

I would presume that the more extreme cases are just more likely to be in the media or on the internet. People wouldn’t really tune in to watch someone say yes I have inconvenient symptoms that slightly affect my daily life. I also have some pain which is managed well with medication. They’re more likely to be interested when it seems really extreme.

I don’t mean to say they aren’t possibly exaggerating but I have had a temporary stoma in the past - they don’t tend to give them out for fun.

No, of course they don’t, here.

In the US? What if you had the money to pay for it and you doctor shopped around to find someone who would take your money and do it?

It has happened.

Possibly it’s happened but I don’t think there is an outpouring of young women getting feeding tubes and stomas fitted to exaggerate their illness. As I said in my post, I think it’s more likely that actually it seems like many have extreme symptoms because they are the ones who are more likely to be successful on YouTube and the like, because their story will be more interesting to people than someone with mild symptoms that are well managed.

So, you see more of those with extreme symptoms, whereas those with well managed mild symptoms tend to be just going about their normal business, which makes it seem like there’s lots more of them.

These are good points, and obviously the majority of people wouldn’t do this.

But there is a sub culture of those who do and they’ve been doing it for years. Not necessarily faking whole illnesses but embellishments and exaggerations for sure, it’s a whole identity for them.