In 1993 I was effectively paralysed due to severe M.E. and I lost the ability to speak, feed myself, sit up or write my own name.
My parents and I were completely abandoned by the medical profession. I couldn't get to hospital except on a stretcher in an ambulance but our family GP refused to come and see me because he believed my condition was "just" depression. Most of the medical literature on Chronic Fatigue Syndrome at that time posited depression and negative illness beliefs as the perpetuating factor of simple post-viral fatigue.
When my parents, in desperation, brought me to A&E because I was having difficulty swallowing the treatment offered to us was to put me on a psychiatric ward and withhold food from me until I got so hungry I would quit my histrionics and feed myself.
There were many other encounters that framed me, and sometimes my parents, as malingering, neurotic or attention seeking. I still have a mild panic response when I have to see a doctor or healthcare professional because the cumulative assault on my integrity has cut so deep.
Losing the ability to perform the most intimate self care is traumatic. To experience systematic denial of disability when one is so dependent on others for survival is terrifying.
That's why I'm speaking up for Severe M.E. Day today.
Please look up #severeME today on Twitter and read about people of all ages, genders and background who live with profound disability that society closes its eyes to. Some are tube fed, some fight for survival every day, for years on end. Just by reading their stories you permit them to exist, you give them the dignity of being known.
Medical science does not understand the mechanisms that cause loss of physical and mental function in M.E. although it looks increasingly likely that an auto-immune response involving disruption to mitochondrial function (that is, energy production at the cellular level) is responsible.
Severe M.E. is hidden away because it is a huge medical embarrassment.
My wish is that the medical establishment examine its conscience, wipe the slate clean and commit the funds to research and treatment proportionate to the devastation that this illness causes, both to individual lives as well as the cost to the economy.
Until then my wish is for people with severe M.E. to be accorded greater dignity, compassion and support. That can't happen until the world knows they exist.