Wednesday, May 11, 2016

A few thoughts on how society is influenced to mistreat zebras/complex chronic illness patients

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April 2016

People all too often take what I express about my illness out of context, they may act afraid of it or disgusted by it in some way - thus they pathologize it. This is what makes Zebras (EDSers) and others with similar complex chronic illness not wanna talk. So we'll either suffer in silence or express and be criticized...

You know, people have no authority to criticize and dump on what they don't experience - You try having all of these food intolerances and allergies. You try have gastroparesis and having the stomach room and digestion speed of an 82 year old. So if you wanna live in my body for a day, and still wanna thumbs down me then, be my guest...  
Society today is sick in the way that they're quick to judge others people's struggles. It's insane. I don't think they would've done it back long ago, but who knows. I wasn't around then. Really what I'm saying in the video clip is; I'm sick of having gastroparesis and mast cell activation/multiple chemical sensitivity. It's just that if I use big medical terminology like that, people don't get it and tend to respond even more coldly. But you can't win I guess, can you ...

Those above conditions are majorly part in parcel with EDS...a condition I most certainly have and have been diagnosed with three times actually (dermatologist, rheumatologist, geneticist.) I have paper proof which was already put on my healthcare fund, though I shouldn't even have to plea my case to a bunch of (sick minded if you ask me) harsh skeptics. 

EDS causes many very painful, frustrating, debilitating, energy sucking systemic complications, albeit strange, away from the norm, and mostly invisible (or not visible in the way you expect) ones - and yet EDSers  and those with similar complex conditions are horribly abused and judged, sometimes even by their own family members/friends. This can sometimes cause mental health affects that makes it all worse. As a result, family distances, friends turn their backs entirely, people who don't even know you may make hurtful allegations, etc..
Society is in denial about our conditions, because it's a problem on the rise threatening the balance books of the healthcare systems. They're also afraid of the lack of solutions, which could bring about liabilities. This is what it's really about ...

Don't people realize that the stinking and in fact abusive attitudes towards EDS and other complex, chronic, genetically based "newer" illness on the rise (mitochondrial disease, ME/CFS, EDS etc) is totally bleeding out into society too? Yesiree they are. But people need to wake up and see how badly they're treating those who are in a lot of pain and very challenged - and need nothing but support, not discrimination and abuse. Get with it people. Stand behind us to help us back the healthcare systems into corners where they'll have to make crucial changes, don't turn your backs on us and let us drown while you inadvertently bow down to change-evaders.

Their power is so strong that often (not always!) people's own family even, has treated their chronically ill loved one badly. Why? because "out there", family members and friends are constantly bombarded with subliminal messages about how much of a mentally ill, delusional "faker" their loved one apparently is. This needs to stop.

-Rosie G. 

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