ysuTribe Undercover

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  #ysuTribeUndercover

#ysuTribe Undercover

Want to know why you should join our closed group when you're already a member of many others?  

If you have Ehlers-Danlos or a Hypermobility Disorder, Gastroparesis, Mast Cell Activation Syndrome,  Craniocervical Instability, Dysautonomia and other chronic illnesses, you’re probably a member of a a number of closed Facebook groups - so why is ours different to the rest?

It's not another closed support group. Primarily our intention

is for it to become a space

where all sorts of 

Behind-The-Screen 

activities go on, and hopefully leaves you feeling lifted

and empowered. 

Likewise, if you’ve got any of the illnesses that often come with EDS/HSD, like Gastroparesis, Dysatuonomia, CCI and Fibromyalgia (to name but a few), you’re probably the member of a number of groups too. 

And you’re probably wondering why you should join our closed group.

Our Undercover page is not a support group.  

We want it to become a place where you feel safe and free to express your worries and opinions in a warm environment. Primarily our intention is for it to become a space where all sorts of Behind-The-Screen activities go on - and hopefully leaves you feeling lifted and empowered. 

We want to ask you all questions and use your comments to make magazine features for HEDS Up!, so that the Able world can see life from your perspectives - ESPECIALLY AS WE PULL TOGETHER OUR PANDEMIC EDITION.  WE NEED YOUR VOICES MORE THAN EVER BEFORE.

We will change or remove your identity in our features if you want us to, and so you can speak honestly, candidly and without fear of judgement or anger from others. 

We need you to come there to tell us your experiences of living with Invisible Illness and/or Disability, post your pictures and videos for us to use in the project and give us your opinions on polls that we post. 

We’re also planning on bringing you lots of little perks as a thank you for being part of the Undercover Tribe and supporting the project, including exclusive discounts, special offers, gifts and our Treasure Hunt (once we have enough people and activity in there).

We want other Behind-The-Screen-Teams to come to ask for and offer help, highlight special causes, fundraising events, stories, surveys or petitions, and plan and participate in co-ordinated and timed campaigns as part of the #ysuNetwork. 

We want you to bring your projects to us, so we can be part of them too, and help you to grow your audience and get important messages out in to the mainstream. 

Charities, organisations and groups have all chosen different hues to represent our illnesses.  

We could paint the internet any colour we choose if we all work together and amplify the messages we’re all trying so hard to have seen and heard. 

We want our closed group
to become a hub and
hive of activity – where 
members can ask personal questions and attend 
to business.

 Secure Contributions

Once you’ve read the other features in our Project Special, we hope you’ll understand what we’re trying to achieve and how the closed group is a big part of the overall picture. 

Basically, though, we want our closed group to become a hub and hive of activity – where members can ask personal questions and attend to business. 

Of course, the most obvious benefit is having so many people with so many illnesses and disabilities and so much knowledge all under the same umbrella, instead of spread about cyberspace. 
We hope it’s obvious by now that people with Ehlers-Danlos or Hypermobility Disorders often have many other conditions that other people have without having the collagen problem.

Got Gastroparesis and pretty expert on it? Maybe Dysautonomia, Tarlov’s or CCI? 

Lots of people with EDS/HSD have them and know an enormous amount about them too, with newbies stepping forward, scared and confused, every day. 

Imagine how much you could help Stripeys (and other Spoonies*) by sharing your knowledge and tips. 

How many times have you been in a support group for Dysautonomia, for example, and told someone they need to be checked out for EDS/HSD, or thought 'That bendy stuff could apply to me'?

Imagine what being able to come to one group that covers all your illnesses, and mining and sharing the knowledge you have – or getting the chance to pick the brains of so many Expert Patients. 

Imagine being part of a growing patient project, finally having your true thoughts published freely, and contributing to changing our world for the better.  

The power is ours - together we CAN prove ignorance is no excuse, and end Institutional Abuse.

 We've been hiding clues

since 2016 and adding

to the #ysuWishlist of

goodies we want to get

and giveaway to you.

 Fun Bits

We cannot make this project without you sending us photos and video footage of your daily struggles, answering surveys, voting in polls and sharing your thoughts and experiences with us. 

You can always use our email addresses to get in touch privately (words@youseeu.org and images@youseeus.org), but the closed group gives you a place to post things and participate in the project with just a few clicks.  
However, were also hoping to introduce some fun bits too.

If you’re in the Undercover Tribe, you’ll be at the front of the queue when it comes to expressing yourself and having your voice heard - something that has seemed almost impossible since the start of the pandemic.

You’ll have the chance to get passwords to preview and give your opinions about locked parts of our website before they’re opened to the rest of the world.  

You’ll also get the chance to have a play and take part in the online ysuSmiley’s Treasure Hunt – we’ve been hiding clues in our stuff since the project began in 2016, and adding to the #ysuWishlist of prizes that we’re trying to collect to giveaway to you.

The bigger our online Tribe is and the higher our numbers, the bigger and better goodies and giveaways we can secure for you!

Bedbound Activists

It’s not all play, though. Our closed group is very much about work – and growing the #ysuNetwork, which we have written about to make things clearer for you. 

If you’re part of the Network, you’ll be in the Undercover Tribe and that will be one place where you can come to coordinate with others, so we can share your stuff as and when you want us to. 

There are certain things we want to grow (like our ‘promote’ section), which will require you to be part of the closed group, and members will get perks like passwords and special access to sensitive and confidential material and press releases (like Patient A).

The #ysu project will always have Ehlers-Danlos and Hypermobility Disorders at its heart and as its focus – even if it seems like we’re going off the beaten track! 

Our goal is Bendy-Based.

But so many other people with Invisible Illnesses and Disabilities are treated in the same unacceptable way as us, enduring the same Institutional Abuse as we Stripeys do.  

It’s time to stop this. 

It’s time for a new kind of fight. 

written by #ysuWords

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