“I know by posting those snippets of information the project would be noticed," our HH states. And noticed we were – although not necessarily in the best light, where everyone was concerned. One particularly disgruntled Facebook user commented, calling our page ‘bollocks’ and claiming we were ‘doing more damage than good’ by sharing the post. 

Unlike some we don’t delete negative comments about the project on our page, preferring to stick to an authentic 

‘warts-and-all’ policy. 

“EDS, HSD, Dysautonomia, Dysmotilities, Gastroparesis…Living with these and other Invisible Illnesses and Disabilities is a messy business,” our HH continues. “We could try to complete this project, reach our goals, by sticking to the rules large charities set, or we can work according to Media Law, and the freedoms that gives us. I’m around half-way through my life and conformity hasn’t changed anything for three generations of my genetic Stripey family.”

Which, for our creator, leaves only a new route and a new kind of fight to try and stop that number rising to four.

What about the accusation on our page that we were doing more damage than good?  

“Ummmm…I’d say two things.” Our HH takes a breath and a few moments before answering, lips rolling in on themselves. “Firstly, no damage was done, and any fallout would have been financial – not physical, as is the damage done to us by the Medical Field every single day. The relevant bodies received the relevant cash and contracts still stood. We’re concerned with people, not contracts. 

We had messages from people saying they had received messages to their personal inboxes telling them to take the post down from their personal pages due to contracts. They didn’t have contractual obligations, and neither did we. 

We’re a group of patients exercising our rights to tell the world what we need, and what we disagree with.”

And secondly?

“To me, the bigger issue should always have been why the person who had the confidential papers in their hands allowed them to be photographed in the first place? What were they trying to say about the new diagnostic criteria?

We were given copies of documents considered by two charities to be confidential directly from the meetings in which they were given out. We chose not to release those before the charity amended them and showed them to their supporters, but we could have just shared them with the community before they did. 

“I don’t believe in backing down in the face of a perceived, rather than an actual authority,” our HH says. “I’ve had enough of elitism and egotistical actions. I want, and we as a Community need, real action – and inclusion. 

When it comes to Ehlers-Danlos and Hypermobility Disorders, as with other illnesses, there are no monopolies. 

There are no rights of ownership. 

Is that why instead of taking the images down, we left some redacted versions online? 

“Yes. We’re an independent project being made by people who have suffered loss because of Ehlers-Danlos and Hypermobility Disorders. We’ve lost people we love and we’ve lost careers, the chance to have children, the chance to have choices about our future. Our lives are controlled enough by the illnesses we have and the medical attitudes we endure. We’re not about to let any organisations dictate to us.”

Our Head Honcho may sound coolly confident about all of this, but is that the way they were feeling at the time? We think not. 

“My Autonomic Nervous System really ramped up that day. My heart was thumping out of my chest at around 170 beats per minute, I could hardly hear because of blood pounding in my veins and I had sweat dripping down from my armpits to my elbows.”

Safe, then, to say that Dysautonomia raised its ugly head well above the parapet that day.  

“I always get an autonomic kick when I see responses to our work, but this one was an Autonomic Shitstorm and there was nothing pleasant about it. It took a day or two for my system to return to its version of normal.” You can tell by the way they wipe their hands on their trousers and their slight breathlessness that even just recounting the day makes our HH’s system start to react again.

“We could have identified the person who originally shared those images,” the project creator goes on, “but we didn’t because we didn’t want them to face any sort of attack. We would rather be the barrier and take the negativity than an individual. That doesn’t seem fair.”

And that is an ethos we’re maintaining across the entire project – like with Patient A. for example, something else that may cause some fallout. “It’s a really important story. Having complete access to the medical records of someone with Ehlers-Danlos, being able to dissect them and see exactly where the mistakes and abuses are, then being able to put that all online…It will really demonstrate how, when it comes to caring for us Stripeys, the NHS in the UK has an incredible amount of work to do - and is opening itself up to some very expensive law suits and bad PR.”

It will also highlight the worrying volume of mistakes, behaviour and unacceptable attitudes existing with the NHS that impact on everybody’s care, and not just those with little-known illnesses.

Surely though, by sharing those images of the new diagnostics last year and exposing the Patient A story, we’re limiting the number of  people and bodies willing to help support the project?

“The two main charities won’t support us or share any of our work.  That obvious. They're plagiarising us, copying our ideas, then literally refusing to support patients (we are EDS patients) who say or do the 'wrong' thing - in their eyes. 

That is NOT what the charities are meant to do.  It’s a shame, but it’s not the end of the world. You either take criticism, or you don't. We do..."

If our treatment of the Patient A story works, then it may be the case that we find it hard to get interviews with NHS medical professionals in the future. 

“But this story must be told because it is the story of thousands of other patients who have Ehlers-Danlos, Hypermobility Disorders, ME, Fibromyalgia, Gastroparesis, Dystautonomia for example. 

I’d rather we’re known for taking risks, whistle-blowing and speaking out than to be a soft project that achieves nothing. Living with a lifelong illness is tough. #YouSeeUs is willing to be tougher."