....fatigue is the
least of our many
8 ye a r s U N D I A G N O S E D + 2 6 ye a r s 1 0 0 % B E D B O U N D = 3 4 ye a r s L i vi n g w i t h S E V E R E M E W I T H O U T M E D I C A L S U P P O R T
8 ye a r s
U N D I A G N O S E D
2 6 ye a r s 1 0 0 % B E D B O U N D
= 3 4 ye a r s L i vi n g w i t h
S E V E R E M E
W I T H O U T
M E D I C A L S U P P O R T
We M.E. sufferers really want and need so desperately to be “seen, heard and recognised” and to show that we refuse to be ignored or to be invisible to the world.
We may not be able to present ourselves to the world because of severe ill health but we want to be listened to and heard by the appropriate authorities and to receive services, and appropriate help. We would also like to see more biomedical research undertaken, and cognisance taken of the body of biomedical research that exists at present.
We want the medical profession and general public to understand the seriousness of the illness and remember that underneath the sheet there is still a human being.
Let me speak by this picture. It was taken for academic school to show what I’m fighting against. I had to stop the school a year later. I wanted people with ME to pose for me in a artistic way and make a poster for awareness. Nobody volunteered. So it’s me alone here sadly enough.
The rainbow symbolizes a bridge from ignorance to knowledge.The many colours represent the fact M.E. doesn’t discriminate and is an illness of many layers. The rainbow bridge helps us to remember those who have lost their lives to this disease and to honour their memory.
Note, my unwashed hair, just one small example of the many unpleasant things we put up with suffering from this illness. The simple act of having a shower, and washing and drying hair can feel like running a marathon.
People with severe ME are often the most abused and neglected by the health system and associated medical professionals. I have been abused many many times by drs, including my previous GP, consultants, nurses…
Unlike other diseases, Myalgic Encephalomyelitis can be an illness where sufferers go without support from their communities, their governments, and their family…For those with ME, these typical supports are often skeptical, disinterested, and nonexistent.
An exquisitely beautiful, haunting account of the lived reality of Severe ME by Sarah-Louise ‘Feather’ Jordan