Myalgic Encephalomyelitis affects people in all areas of society. Young, old, rich, poor but also the ‘super fit’ and those people who would rather poke themselves in the eye with a big stick instead of *gulp* go to a gym!
With his in mind, today’s blog will concentrate on previously ‘superfit’ M.E sufferers.
This week, I stumbled across a YouTube clip from 2015 Life with ME/CFS | Rugby league captain Richie Barnett I loved it! It was a refreshing change to see a positive, matter of fact, uplifting talk from a M.E sufferer. There was no emotive music or powerful words on the screen, just Richie talking honestly about his ongoing M.E experience. I found it profoundly moving. Now, let me make this 100% clear. I would not wish M.E on my worst enemy but have been hoping that someone in the public eye would come forward and talk openly about their symptoms and how M.E affected their life. This YouTube clip is perfect. Richie was an international Rugby League Captain and was known around the world in sporting circles. His life story clearly flies in the face of any theory that only sickly people get struck down by this dreadful illness. This ‘super fit’, dare I say very attractive ( ;), man was struck down in the prime of life.
I can understand why ‘celebrities’ would not want to come forward and admit to having M.E. As we all know, there is still a huge stigma with our illness. We are still seen, by some people, as malingerers and idlers. Since starting Foggy, my openness has occasionally bitten me on the bum, particularly now I am in the job market. I have been warned by employment advisors to be careful about declaring my illness on my C.V/job applications as ‘we are all aware that overt discrimination exists…’. Sensible advice maybe but when I am openly telling everyone and anyone around the globe about my illness I am 100% opening myself up to discrimination. I can only hope that future employers see me for the skilled and intelligent person that I am and can see past the veil of ill health.
Foggy’s eagle-eyed social media followers will have seen that I am looking for ex-military personnel who have been medically discharged due to ME/CFS. I would like to highlight that these, again ‘super fit’, men and women are not immune to the illness. I would be interested to hear how the military establishment dealt with the invisible illness and how these sufferers are dealing with civilian life.. I have many military friends who find it extremely difficult to understand M.E. They are used to amputations and bullet wounds which can be overcome with mind over matter.
M.E. cannot be overcome by mind over matter.
Some of my military friends have spouses/children/friends with M.E. and initially found it hard to understand how you can not ‘push through it’.
Personally, I would say M.E. sufferers are some of the strongest people on the planet! The daily need for resilience and the level of inner strength required demonstrate that we are not weak, even if our bodies and minds are letting us down.
Sally (and Foggy…..obviously)