In 1993 I was effectively paralysed due to very severe M.E. and I lost the ability to speak, feed myself, sit up or write my own name.
Like many pwme who don't respond to, or in my case deteriorate, following NHS "treatment" with Graded Exercise Therapy, I had been abandoned by my local GP practice a long time ago. My family was shunned. We were told my disease was a result of my negative mindset, or was "just" depression.
I had to be spoonfed at this time because I had lost the strength to lift food into my mouth. At one stage, I began to also have difficulty with chewing and swallowing. My parents, who were then my full time carers, became worried and didn't know what to do. I couldn't physically get to the GP surgery, so they took me to A&E on a stretcher.
The registrar in A&E declared, after a 5 minute examination of my nervous reflexes, that there was nothing wrong with me. He did, however, propose to keep me in hospital for treatment. The treatment for my difficulty with swallowing, it turned out, was to put me on a psychiatric ward and not spoonfeed me so that I would get so hungry that I would quit my histrionics and thereby regain my ability to eat independently.
That was the most terrifying of all my encounters with the healthcare system in my 30 years of ME. But there have been countless other medical micro-abuses along the way: dismissals, barely-concealded derision, outright hostility. Many are too painful to recall in detail. I can't now go and see a doctor of any kind without experiencing symptoms of anxiety and profound shame. I soldier on with all sorts of symptoms and difficulties, whether ME related or not, that ought to warrant medical attention, just to avoid the potential trama of the doctor's surgery.
But my experience is nothing compared to what others with severe ME have endured. My mum declined the "treatment", took me home and cared for me and luckily my difficulties with swallowing subsided. Others haven't been so lucky. Look at the case of Sophia Mirza, who was sectioned because she refused Graded Exercise Therapy, and later died. Although the General Medical Council sided with the authorities and failed to uphold her mother's complaint, I'm in no doubt that her abuse and neglect at the hands of those authorities, including social services, contributed to her death.
I will keep sharing these stories. Until the myth that ME is "not that bad" is squashed, and the abuses we have endured are recognised and brought to light.
(edited June 2018)