Dear #ysuTribe...

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#DearYSUtribe

Dear #ysuTribe...

Dear #YouSeeUs Tribe, 
I’m not sure how to start this, but I think thank you is the best place to begin. 

Thank you to every group that's helped us behind-the-screens.

Thank you to every writer who's given us features for HEDS Up!. 

Thank you to everyone who's sent us photographs and video footage, and to those who've filled in our surveys. 

You have all made me feel

so much joy while

living with my pain

and failing health –

and for that I am

truly grateful to all of you. 

Thank you to every person who is part of our Facebook, Twitter and YouTube tribes. I know in the grand scheme of cyberspace we are not yet a big group, but there are more of you than I ever expected in the first 18 months of the project. 


To be honest, when I decided to set up our Facebook page and post our first video, I thought it would take at least a year for anyone to notice us. It gave me a motivation, as an individual crippled by Ehlers-Danlos and may of the conditions that come with it, that I have not felt in years. 


I felt excited!


Your reaction to that first video [see down the page] gave me reason to try harder. And keep trying.


You have all made me feel so much joy while living with my pain and failing health – and for that I am truly grateful to all of you. 


I only hope, over the course of the project and as we increase in numbers, we canbring some smiles to your faces during your hard times too. 


Decades of misdiagnoses, mistreatment, no treatment, medical mistakes and unacceptable attitudes means EDS dominates my body – 
and my life. 

Stripey Dreams

I’ve been active in the online EDS/HSD Community for 25 years. I’ve always wanted to use the internet to change things for people 
for people with these torturous illnesses, and a quarter of a century ago I busied myself building my first website about it all. 

Ever since, I’ve been researching medicine related to these Connective Tissue Disorders, including their associated conditions like Dysautonomia, CCI, Chiari 1 Malformation, MCAS, Dural Ectasia, Gastroparesis, Dysmotilities…The list goes on…And on.  

And on.
In one way or another, I’ve never let go of the dream of making a real difference. 

It’s too late for my body now. Decades of misdiagnoses, mistreatment, no treatment, medical mistakes and absolutely unacceptable medical attitudes have meant my EDS now dominates my body – and my life. 

Ehlers-Danlos decides when, how and if I move, wash, eat, drink, talk, breathe easily…

Symptomatic since birth, I was born with a Mitral Valve Prolapse (MVP or Heart Murmur) and even my premature birth was a sign of this vicious illness. I’ve been told I would scream in agony when I was given milk, and finding something I could tolerate was almost impossible. 

Most tellingly, my ankles dislocated when my mother was dressing me. This issue carried over from infancy, causing me to fall regularly when I was learning to walk. Even now, half-way through my life (hopefully), they are still the cause of some of the biggest, most life-changing injuries I have sustained. 

My mother was dismissed and ignored by my doctor then, in the same way many of us are still dismissed and ignored today – even when our bendy joints are staring some medical professionals in the face. She was labelled ‘neurotic’ and only found out about my MVP when she sneakily read my notes when the doctor was out of the room. 

Not enough has changed for us since those days, and now I am the parent wanting to throttle the medics as they make mistakes in my child’s care. 

It’s too late for me – now I fight for my child who has EDS and other illnesses because of it. I also fight in the memory of my other child who is not here because of Institutional Abuse, and doctors not being willing to listen to what I told them. 

Respect for EDS/HSD 
and their far-reaching consequences is not something I’ve witnessed 
in the usual NHS doctors 
we have seen. 

Petrified Parent

My first born was also symptomatic from birth. One of the world’s most respected EDS/HSD specialists has said my child is one of the bendiest they have ever seen. 

I understand the potential future implications of this. I understand the potential pain and complications. Neither of us heal well enough for surgery to ever be a safe option. This is terrifying enough when considering other ‘normal’ conditions that may require our bodies to be cut. 
When I think of, for example, what I was told about my child’s spine, and knowing the surgical remedies for that, terrified doesn’t begin to cover how I feel. 

A respect for EDS/HSD and all their far-reaching consequences is not something I’ve witnessed in many of the usual NHS doctors we have seen. 

When my child was five years-old and seeing a Paediatrician because of their chronic head and neck pains, the consultant said he could pull my child’s head off and ‘Bingo! No more pain’.

I know this will sound unlikely to many. But it’s true. And it’s far from unusual in the Dr Dumb stakes. Loads of you will have been told ignorant, stupid things that others don’t believe and that are tantamount to Institutional Abuse. 

This abuse and medical neglect happens all over the world to millions of us with lesser known illnesses and not just EDS/HSD. My experiences, those of my child, my friends and others I see in the Community…The sheer number of us congregating online…It all breaks my heart. 

Makes me feel sick with anger. 

So many Stripeys have multiple illnesses. We’re not just in EDS/HSD groups. We’re in the Dysautonomia groups, the Gastroparesis Groups, the CCI groups, Tarlov groups…We are where our bodies and fight need us to be. 

And it all got me thinking.

Harm is being done. 
It has been for decades. 
The old ways of fighting 
have not worked. 
It’s time for a 
new kind of fight.  

Bedbound 

In March 2016, after being bedbound for around eight months, an idea finally finished forming and I had named it #YouSeeUs.

What’s behind the name is very simple. EDS/HSD are Invisible Illnesses, like those I mentioned up a couple of paragraphs up. 
These illnesses can also come without EDS/HSD.

Not only are our illnesses widely invisible to the medical field, but we as people are often invisible to society because so many of us are stuck at home (or in hospital). Every aspect of our mistreatment needs to be seen by mainstream society. 

Progress may have been made scientifically and in terms of research, but what progress has come for us patients?

The old formula, the old way of raising awareness and funds has not worked in decades. If it had, we would not be suffering as we do. We would not be facing the disbelief and accusations, the lack of access to treatment and protection that we do. 

That we all do. 

I thought of all the Spoonies* who, across the labyrinth of online groups, are fighting and fighting for their own medical conditions, and how truly powerful we could be if we all come together and coordinate our efforts. 

Together we can achieve more. 

I’m not unique in what I have suffered because of the Medical Profession. I wish I were. It’s a sad truth, and a shameful indictment on that profession, that there are so many of us in the world who are being abused by doctors, nurses, physiotherapists, surgeons…Who all swore to help us. 

Harm is being done. 

It has been for decades. 

The old ways of fighting have not worked. 

It’s time to try a new kind of fight. 

For #YouSeeUs, that means pulling the mainstream into our community and involving people who don’t have Invisible Illnesses or disabilities. 

To do this, I wanted to create a call-and-response situation. 

We’re asking WillYouSeeUs? and healthy people or those without the conditions we’re covering can respond and show their support for us with the hashtag WeSeeYou (#WeSeeYou).

Click here to understand more about the role of hashtags in the project and why we’re using so many of them.

My joints are failing, my 
skin is changing, my autonomics struggle,
my digestive system 
doesn’t work well…
Everything about my 
body is so fragile. 

Time's Running Out

So, all things considered, I decided to try to create the #YouSeeUs Network (#ysuNetwork). I know it will take time – and that’s not something I have a lot of when it comes to being able to use my body to work for the project.  

My joints are fragile, my skin is changing, my autonomic nervous system struggles, my digestive system doesn’t work well…Everything about my body is so fragile. 

I won’t have the choice to move my body and use certain parts of it for very much longer, thanks to Ehlers-Danlos and the other many problems it has caused. I am already extremely limited physically – though this isn’t the case for my mind!
My degeneration is a constant reminder that you are probably getting worse too. Every day counts. I would rather we try and fail, than to never try at all. Even if the efforts of the #ysuBTST (Behind-The-Screen-Team) only ever help or lift one  person, the years (and cash) we’re dedicating to the project will be worth it. 

We can all keep battling separately.

Or we can unite and fight together. 

One Locust doesn’t do much damage. However, when they swarm, they are a force of nature. Through solidarity we will realise our power and force. 

EDS/HSD will always be the axis upon which the project spins, but if all of the Invisible Illness communities unify, we can work our way through campaign after campaign, offering each other maximum exposure and amplifying individual messages in an ever increasing sea of voices. 

This is how we’re heard and seen. 

This is how we become the change we needed decades ago. 

When it comes to my everyday life, you cannot comprehend what a difference you make to me, #ysuTribe! You have given me focus, purpose and hope.

You help me through my pain and other symptoms. 

And for all of this, I could not appreciate you more. 

written by the #ysu project creator

 © 2021 for syndication permissions, email media@youseeus.org

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