Discussion in 'General ME/CFS News' started by Kyla, Jul 22, 2016.
Powerful stuff - I'm just reading through and was very struck by this paragraph, which is my experience exactly....
"I feel weighed down by the memory of my attempts to spread education and reason regarding my new situation. Friends and relatives, with whom I have spent hours, days and months in discussion have gone from my
life. It seems the more I tried to explain, the more alienating I became to them but I do not know what caused the rupture except that the social discourse or narrative about my illness, that dictates I am supposed to be pitied but not believed, cannot have been conducive to learning. Long since debunked psychosomatic or psychogenic explanations for physical illnesses are alive and well, in fact they appear to celebrate a revival that mirrors the emergence of possible biomarkers for my illness, which is an interesting paradox."
This is great writing by Dr. Gillberg, everything articulated so well. I wish everyone I knew would read it.
So many parts of this writing articulate so many aspects of the ME experience so well.
"The relentless physical pain and crushing isolation that chronic illness
and its management bring about were, and are, cruel. The experience of
being ill was exacerbated when I realised that few seemed concerned with
my altered situation in life. The terror I felt at this moment of realisation
was indescribable, that something so severely affecting my life and sense of
being meant so little to others.
... Losing my grounding due to illness and disability feels
like the earth is shifting beneath my feet continually. Feeling ill continually,
chronically (many fail to comprehend the meaning of the term) is horrible;
feeling ill and being excluded from society and everything that previously
gave your life meaning and worth, is much, much worse. This is the situation
I found myself in, and the failure of others to acknowledge, or even observe,
my new reality caused me significant anguish."
You can also try a Google Site Search
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