Miscellanea blog post by Robert McMullen, September 2016: “Perceptions of Myalgic Encephalomyelitis”
A person with ME looks back at his experiences and at some prejudices that exist about people with ME in society and the medical profession.
Excerpt:
Before I was ill, I knew very little about ME. I was aware of the scepticism that surrounded it, which, combined with my ignorance, made me fairly cynical about those who “claimed” to have it. It had never occurred to me then that there might be people for whom this diagnosis – given to them – was unwelcome, despised or even denied.
When I was first unwell, before I was diagnosed, I detected no hostility or scepticism towards me. Mostly the doctors seemed sympathetic, concerned and curious to understand what was causing my symptoms. But once I was diagnosed and presented as a patient who had been diagnosed with ME I felt as though I was treated quite differently; as though I was someone I was not. Symptoms and character traits would be attributed to me that I have never had. I read articles by doctors who had never met me, denouncing me by association, as though I had diagnosed myself in order to join some sort of deluded cult of malingering hypochondriacs.
I couldn’t believe that any signatory to the Hippocratic Oath could be so cruel or ignorant to write with such venom without very good reason. My inclination was therefore to believe that I must be different to most other people who were diagnosed with ME, and that they, not the doctors, were the cause of the hostility I encountered.
For years I desperately sought an alternative diagnosis but none was offered. A neurologist once told me to have nothing to do with any of the ME organisations because most people who say they have ME are “just depressed”. But he assured me that I had an “organic illness” and that he would “get to the bottom of it”. His words were comforting to me at the time but the succour was short lived. The only alternative diagnosis he offered was that I had some sort of post-viral syndrome, which was even less useful than being told I that I had ME. In being discharged from his care, I was given the confident assurance that I would get better. Twenty two years later I am still waiting. And if he has not retired, he may well still be offering the same confident assurances to patients like me, oblivious to the outcomes of those he discharges.
