EDhS:

I still remember being screamed at on the ward "I've got cancer and I'm not going on like you!" 

She meant she had something terminal and still wasn't in the excruciating agony I was in and was crying through whilst I was wishing I was in a coma.

My pain management was often administered late and incorrect, lower doses than I should have had to keep me comfortable. So of course my pain would increase and torture me.

They usually had me on a side ward because of my pain - but they left me on this ward to be targeted and to be made to suffer on top of what I was dealing with.

A woman to the right of me was bragging about all the help she'd had from the NHS whilst I had to have a hospital bed donated from Germany as a desperate attempt at comfort and support, and was lucky that that was even a possibility.

The staff were abusive all of the time - why wouldn't they be - they blamed me - assumed I was faking because medical notes meant nothing so my expression of pain was an invitation for them to punish 'the faker' and when I cried or begged they wrote in my notes that I was the abusive one - I wanted to die daily. I've never abused anyone in hospital - never abused anyone PERIOD, but I've been hit and assaulted, left on floors and worse - and yes even infront of relatives and my parents.

However, I made it through.

But these experiences of abuse from staff and people stick with you. They are as burned into you like your scars and no matter what you do you can't shake them.

12 years + of abuse when you needed understanding, better pain management, support and help.

This is part of the traumatic experiences that have me referred for secondary care.

I'm waiting help now. I've never stopped seeking help however - but due to inaccessibility I've lost out on a lot of help I should have had.

My disability doesn't prevent me access - humans that refuse to allow access do.

As if some of us are worthy of help and the rest of us - can rot.

I don't honestly know how I've managed to make it through all I've survived and endured and I am glad I am still here and it's the reason I advocate so hard - so others never have to endure what I did. 

But I still struggle from time to time and the ugliness of the world rears it's ugly head in the same ways - towards me - from time to time.

Until we break down the stigma and educate better in regards to invisible illnesses - people who are paid to help will instead harm - and that's never okay.

Until your relative has to come to hospital to pick you up off a floor you've fallen and been left after being kicked by nursing staff and ignored and called crazy, and lift you into your wheelchair in front of a security guard that's heard you cry and beg for help for over an hour - you can't know what torture lies within the rooms of a hospital, for many it's a sanctuary of support and help - for others it's a literal hell; and don't even try and tell them you're suicidal - they'll laugh in your face or come up with surreal and false narratives that depict you as someone they think you are and they'll lie in your notes about that too. 

Hospital is not a safe haven for the disabled - and I do anything to avoid it - no one deserves such torture. In America though you'd have to pay for the torture instead of it being free. Guess I'm thankful for something.

Sarah Wingfield 

EDhS + warrior.

#disabilityawareness #disabilityinclusion #disabilitysupport