Lack of support will always be an issue:

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America has started to refuse treatment for people with the same condition as I have, and the UK didn't really offer me anything other than opioids and things that I absolutely hated.


The physio's didn't really understand that it's a disability that requires pacing oneself and pushed too hard and caused seize ups and bad flare ups and I wasn't offered any mental health support or counseling or anything from becoming newly disabled in 2009.


I had to adapt and endure on my own.


I still do.


I was a early-teenager when my spleen was engorged on an x-ray but I was told to ignore that because that's not why I was there, had they investigated properly and taken bloods to show inflammation markers I'd have been diagnosed and would never have lost everything, my business I started from scratch, the private rented home we'd had nice, my mobility, education and everything.


I'm getting back into college now and I'm working towards all my goals and getting my life rebuilt.


We say we have a NHS but we've had a skeleton ðŸĶī NHS for far too long, barely any mental health or adaptation support and the bare minimum to nothing in regards to rehabilitation or anything.


They push pills that are more damaging than helpful onto you and because they can't see your disability they punish you when they think you're faking.


This needs to change.


-S. xx

Kawaii Doll Decora ðŸĐ·


#disabilitysupport #disabilityinclusion #ehlersdanlosawareness #ehlersdanlossyndrome #hypermobileehlersdanlossyndrome #hypermobility #disabilities #honesty #support #DisabledAdvocate #dynamicdisability 

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