New Book on Severe ME
TORTURED BY THE SIMPLEST interaction, normality is beyond people with Severe/Very Severe ME.
The risk is great; those who would help are often the cause of harm and deterioration, through their lack of awareness and understanding.
My new book, "Severe ME Featuring Justice for Karina Hansen" a massively updated and expanded version of my first book- this time featuring the voices of people with Severe ME, Carers, Advocates and Professionals from all around the world, is written to minimise that hurt as much as possible.
You need to understand how much pain you can cause, when even a whisper can drill into the person’s brain, sending sharp shards of pain crawling round their head , when any noise can be a torture that makes the person feel like as if they are being hit repeatedly with a sledge hammer.
My wife writes :
"You need to understand why you can speak to them but are tormented by the painful sound of their voice and the inability to process and understand their reply.
The true reality of ME is bizarre, disturbing utterly horrifying and frightening as you descend into physical and mental chaos,tortured by everything. I doubt you can comprehend it even if you wanted to. There is an impossible gap between your reality and mine. And that is why I weep.”
Your approach and understanding can make such a difference. You can be a lifeline, a true support, an advocate, a help. Or you can just be another part of a tormenting hostile environment, alienating the person still further, inadvertently adding to their discomfort and neglect.
For more details please see :