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?

[RainbowZebraWarrior]

@Muthapuppa this is the problem. The application is brutal, and when you are just trying to deal with day to day life, it becomes nigh on impossible. It took me a week of writing out the form. That in itsself absolutely destroyed my hands. I was given an extension, but I felt constantly stressed by the whole process and worried that I'd have to PROVE my worthiness, and it wouldn't be enough. I hate having to admit that I can't cope. Single parent. Child with probable EDS, brain fog every day. People assuming I'm ok as I look ok sometimes (despite barely being able to walk) Trying to avoid using a wheelchair because I don't want to 'give in' It would be absolutely draining for a 'normal' person. I feel panic that the PIP people haven't received my claim, or that they will refuse it. Don't want to have to go to tribunal as I am so fatigued from fighting my corner on a day to day basis I just don't know how much I really have left in me. I kept being told to get CAB to help me fill out PIP form.
Heard so many horror stories about how they fill it in in such a way that it sounds like you are lying. I simply wouldn't go there. They don't know or understand the condition, so I don't want someone filling it in like I'm some generic nobody. I've filled it in honestly. But my god, it felt depressing admitting how useless I'd become.

[Muthapuppa]

@RainbowZebraWarrior, CAB are very good with PIP applications and will help with appeals too. You can ring the PIP office to check they’ve received your application form. I understand they are running really behind and have a backlog due to problems with Royal Mail.

Re the wheelchair, if using one when you need to helps you to retain independence and enables you to get on with doing things or get out of the house, you aren’t giving in, you’re empowering yourself by using the right aid for your needs at that time. I used to be the same, but as I’ve got older I have learned to accept help and make use of any aids and strategies that are available to me, as well as accepting that sometimes it’s ok to allow myself to stop and rest. Doing those things means, ultimately, I can do more and be there for my dcs. If I run myself into the ground I’m no good to anyone. A teenage relative of mine has ME and refuses to use a wheelchair, which has resulted in them being stuck in the house, whereas my ds2 sees occasional wheelchair use as another tool in his self-management toolbox. His life is still very restricted, but occasional wheelchair use gives him much needed freedom that he wouldn’t otherwise have.

[HandforthParishCouncilClerk]

I know a few people with it - one has been generally fine apart from a propensity to injury until it came to pregnancy and then she really struggled and needed extensive physio during and after.

The other has had to have extensive surgery on both knees and a hip replaced due to bone issues caused by her over-relaxed ligaments. She’s only 34.

[Mickarooni]

@SmidgenofaPigeon

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.

I agree and I think people are thinking about how the medical system works here and not realising how it can be easily manipulated in the US if you have the funds and means.

[UserFedUp]

@SmidgenofaPigeon

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.

I wonder if it’s more a case of the nhs wants to discredit sufferers to avoid having to fund the help that sufferers need

I’ve seen myself after my issues how EDS was documented as a ‘red flag for FII’ etc and how are every turn we were accused of exaggerating needs when we were not.

[UserFedUp]

You see a lot that now hyper mobility is diagnosed and not EDS , no further tests are done and it’s played down. We were lucky when dc were diagnosed we were seen in a genetic clinic etc but I know of families now having to fight for a correct diagnosis and support this is another reason why people are ‘shouting’ about symptoms they need to be believed

[GreyTV]

@Ayearofmad you said neither should medics be sticking feeding tubes, stomas, catheters, Ports into people without a damn good reason

Exactly. All these people needed these surgeries, whether they want to spend they life as an jnfluencer or not, these conditions sound shit and if taking control of their lives and the information is the way they do it, then that helps them. You can’t go to a doctor like a plastic surgeon and ask for a feeding tube! These are people who will have died without nutrition and meds. There must be thousands of people of not more in the U.K. with feeding tubes etc. Are you saying they all tricked the doctor?

[UserFedUp]

I think in the US it’s more a case of drs believe their patients and aren’t bound by funding issues whereas in the U.K. there are blocks on so many levels it’s easier to make out that people are exaggerating or faking than give the correct level of care or be honest as to why they can’t have the correct care

[UserFedUp]

For example women in the US are given epidurals quicker and more often ….. doesn’t happen here a lot of women have to wait or go without as the staff aren’t there to so the epidural. It doesn’t mean that U.K. women feel less pain or are exaggerating the pain they do have

Or for HG, here women are fobbed off as ‘it’s normal to feel sick’ and have to beg for drugs like zofran and told by drs ‘it’s too expensive’ whereas in the US they have zofran pumps and much more support.

[Tal45]

I know someone who has this, she has missed a load of school and spent a large amount of time in hospital. She has really had a terrible, terrible time with it.

[CovidDoesNotExistDuh]

Yes I bloody have it and no feeding tube but I do have severe episodes of gastroperesis, I dislocate joints daily, some joints even a light switch is too much for without a splint so I use splints regularly.

[RamsayBoltonsConscience]

My niece has this and was very debilitated for about 5 years until she was properly diagnosed. She has hyper mobility and issues with low blood pressure (amongst other things) but since taking medication she's hugely improved. For someone who physically couldn't get out of bed, she has just started an MA and is living a 'normal' life.

[UserFedUp]

My dc suffered and I just got called a liar and that I probably had Munchausens by proxy.

We are bombarded with messages of speaking out truth, being kind, being aware of invisible disabilities etc etc and then people judge others like this

[Mickarooni]

I think that denying the massive problem the US and some other places have with over treating isn’t helpful. It’s as harmful as the NHS/socialised healthcare gaslighting people. It’s different but still a huge problem.

[AppleBlueBerryPie]

I followed an EDS YouTuber called Amy Lee Fisher and she died of it. Don't think that was "performative". Based on her accent she was definitely not USA based.

Amy did make a huge number of informative videos normalising chronic illness in young people. She talked candidly about how to change catheters, period issues, mental health and other topics that newly diagnosed young people would find impossible to get information on otherwise.

As with everything on YouTube, if you don't like it, don't watch it. And if you don't get it, it wasn't made for you. Reading the comments is a good way to gauge how much positive impact a video makes, and viewers are usually pretty good at calling out attention seeking or fake behaviour.

[TheYearOfSmallThings]

in the US it’s more a case of drs believe their patients

Only if they have insurance.

[Caramellatteplease]

In the US it’s more a case of drs believe their patients

Only if they have insurance

If they didn't have insurance the doctors wouldn't treat would have to take a non interventionalist approach because are restricted by funding.... we in the uk know nothing about that...

[Becca19962014]

I've EDS and it's dreadful trying to get anyone to understand. I even took a social worker to a medical appointment about it effecting my breathing and they still came away telling me to just try a bit of mindfulness and I'd be back at work in two weeks.

I've seen a news article in my local rag about someone with EDS today and they suddenly got it at 20. They now need hundreds of thousands to get their neck fused in America are 25 and will die without it. She's very lucky to have family who can help her.

I was told I would just die and to prepare, that was three years ago. Still around albeit really struggling due to no help since March 2020, and because it hasn't collapsed yet being accused of lying; my breathing is compromised and I'm in so much pain with it today and now I can barely see straight. I've PTSD and that's badly triggered which effects my pain as I tend to flee from situations and my body just isn't good at anything other than barely moving anymore hence the pain. My arches are collapsing too and I had a severe sublux April 2020 which has become permently disabling as I can't get to see anyone at all anymore, it's so bad I can't manage any ramps or even get into a car.

On the other hand the OT I saw after being diagnosed told me to do physio every day (been doing it for decades!) as another patient of hers got all her functioning back.

It's a spectrum definitely.

Hope this makes sense!

[Themeparklover]

I have 2 friends with it but they have never expressed pain apart from showing off stretchy skin, they function quite regularly day to day, almost undetected which has shocked me reading about the severity of it, the first friends parent did pass away last year though she had the condition but we weren't told of the reason for passing

[Becca19962014]

I had stretchy skin, pain and severe stretch marks for most of my life. But when I hit 30s things got worse and then I was diagnosed. I was told that at 40 things always got worse because of some natural thing that happens to collagen at that age, I didn't believe him, I should have. It's definitely something that deterioates. Just at a different rate I guess.

Also, I hid how things were for me from everyone. I spent my childhood being bullied by my family for being in pain and ill and learnt it was something to hide so I did. Until it got so bad people saw it for themselves. I lost my job and a lot of friends because of it.

[BiBabbles]

Most disabled youtubers I know might do a few informative videos for newly diagnosed, but most of their content isn't aimed at doing that. I don't know any that only do 'newly diagnosed' content or market themselves that way though there are a lot out there. I don't think it's fair to expect all disability related content to be newly diagnosed friendly or that all newly diagnosed people are looking for the same experience.

Personally, I am grateful with some of my conditions that there people who've opened up about their experiences with medical options more out there and the risks and benefits of them. Especially in the US as discussed, there is a push for more medical options - even ads on TV telling you to 'talk to your doctor' about them and I think this kinda counterbalances that, discussing the risks in vivid detail. I think as pp said that we're so often trained to hide and shut up about it that it can be a relief to see others talking about it even when it's not my experience of that condition.

Some might be overegging it or even outright lying about conditions, but that's true of anything online, I don't think disabled Youtubers do that anymore than any other group. Pretty much every online space I've been in has had those, some even more risky I think (looking at some of the fitness community there with their 'natural' results...).

I think in the US it’s more a case of drs believe their patients

I don't think it's possible to generalize an entire nation's medical care, especially not one has wide and diverse as the US, but for the experience of myself and those I know, the whole insurance situation tends to prolong things, the "let's wait and see" happened a lot until it's more expensive to treat and then going for the biggest option possible whereas in the UK, I think there is more desire to treat things earlier when cheaper, going for the smaller options, but also an issue that if things can't be done then it's more 'come back if something changes' which can be an issue with chronic conditions.

[Moonopoly]

I came to this board looking for some support and this was the first thread I opened. Your attitude is pretty gross OP to be honest. Just because a spectrum condition doesn’t effect you in one way, doesn’t mean others have the same experience.
I was hoping to come here for some support but don’t fancy being told I have munchhausens because my condition effects me differently to others.

[Becca19962014]

@Moonopoly don't judge everyone on a thread by one post. Condition effects everyone differently. You can, if you wish make your own thread for support which I'm fair sure you'll get. I think MN let you start your own thread pretty quickly. To be honest you're more likely to be dismissed in real life with this condition than on here.