Tip Of The Iceberg


Bekky W is a #ysuTribeOG. She has been with us right from the start, when we arrived online in September 2016.  And was one of the first Tribe members to send in some photographs.  A while back, Bekky commented on our page, telling us ‘In my honest opinion, you need to make EDS very personal’.  We were happy to see that she thought we felt the same way.

#YSU was started because of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (EDS/HSD) and the appalling medical attitudes and Institutional Abuse that are ruining and even costing our lives. 

While August sees us going green for Gastroparesis, we have not forgotten our focus on EDS/HSD.  The #ysuBTST has it – how could we forget?   

Many other conditions come with or are caused by EDS/HSD, and the team-behind-the-screen (BTST) have many of these illnesses – including Gastroparesis and Digestive Dysmotilities to name just two. The tip of the iceberg…

So, although EDS/HSD are at the heart of the project (and in our Facebook handle - @ysueds), we’re not just casting light on these two illnesses.  With your ongoing support and input, we will be covering as many of the conditions associated with EDS/HSD as we can, because if mainstream society is ever going to understand this vicious connective tissue disorder properly, we must detail the other diseases that can come with them. 

In doing this we are also hoping to help people who have the same illnesses without having EDS/HSD, and who face the same struggles, ignorance and abuses as Stripeys and Bendies. 

We know that together we can prove #IgnoranceIsNoExcuse – no matter the illness. 

We have not forgotten our Collagen Compadres.  Our own suffering and losses mean we never will.  Especially when, as you’ll see below, humans like the awesome #ysuOG Bekky put the personal realities of life with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders so simply - #BekkyWeSeeYou.

Bekky wrote:
This is what EDS looks like. This is what my life has been just over the last three weeks. I’m not saying this for attention or sympathy. I’m saying this because so many people out there either don’t know or don’t believe that EDS exists. 

EDS is constant pain that you know will only get worse. 

EDS is having hospital workers know you by name and recognize you when you arrive. 

EDS is never knowing if your joints will stay in place.

EDS is swelling everywhere.

EDS is bruising from anything (dislocations to a slight brush against a table) that you try to hide but can’t because they’re all over your body.

EDS is feeling lonely because you’re in hospital. 

EDS is feeling guilty that people have to inconvenience themselves to come visit you. 
EDS is not even wanting to see them because you look like such crap. 

EDS is wanting to go out but being trapped inside because you can’t move. 

EDS is being separated from 
your kids far too often.

EDS is feeling like you can’t parent your children and that someone else would do better – that your children deserve better than you. 

EDS is having people thinking you’re just looking for drug (Drug-seeking)

EDS is not being able to eat without throwing up, or being in so much pain from it that you’re scared to eat.

EDS is knowing that people think you’re being dramatic.

EDS is tearing off a layer of skin just from removing a bandaid.

EDS is braces, crutches, wheelchairs, splints, operations, physical therapy, toilet frames, shower stools and a million other aids and adaptations. 

EDS is having to go to the toilet in front of other people because you can’t manage alone.

EDS is crying in pain and exhaustion. 

EDS steals your life. That’s what it does. 

'EDS is...' words by #ysuTribe member Bekky Waterman.
Email media@youseeus.org for syndication permissions.

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