Here in Neverwhere..

Khaly has posted a terrific  new blog : http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/

..which introduces the concept of "Neverwhere" :

"Neil Gaiman is one of my favorite authors. In his book “Neverwhere”, there is another whole world brewing beneath the city streets, in London Underground. People fall through the cracks and end up there, becoming forever invisible to those who walk and work and live their normal lives Aboveground. Life in Neverwhere ceases to follow the rules of normalcy, and getting through each day’s fresh serving of Hell is a cause for celebration.
So it is with this disease, which we call an invisible illness."
 
 I've posted a response on Khaly's blog.  Here though  I'd like to chart ten facts I've discovered , for myself,  about Neverwhere , this place where we struggle :

1. Everyone eventually walks away : Friends, Family, Church, Consultants.
2. No one really wants to know how bad things are.
3. No one can possibly know how bad things are, apart from the person with ME.
4. Nothing's changing : the psychiatric lobby grows increasingly powerful, the medical profession is profoundly uninterested, the State thoroughly compromised.
5. There is no one to help the most severely affected.
6. The value of ME Medical Conferences lies  in inverse proportion to their impact upon people's lives; there is an increasing unreal gulf between the science and the reality on the ground.
7. A lot of people have made a name for themselves on the Conference Circuit, they are doing okay, the psyches are doing okay, the Lightning Process practitioners are doing okay, ME  patients and carers remain invisible, ignored, negated.
8. There is not one major ME Group that is doing anything worth a dime,  for the severely affected.
9. You get hurt : you get attacked, slandered, insulted if you try , exhausted as you are, to make a difference.
10. One is terribly ALONE.
Like I say, this is my experience. I pray it is better where you are.

Popular posts from this blog

A letter to Sir Andrew Dillon , Chief Executive, NICE

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

A 10 point nursing model of practice for patients with Myalgic Encephalomyelitis (ME)