Mum has been writing again; this time it is a little ME related article called “A Reflection: Gain or Loss”. I have inserted the text below and it is also available to download as a PDF file by clicking here.
A Reflection: Gain or Loss
The words attributed to a well-known psychiatrist have been on my mind recently. He said that people with Myalgic Encephalomyelitis (M.E.) “want a physical diagnosis for financial gain.” Now it would seem to most of us ordinary folk that a physical illness is best diagnosed as being physical. Anything else can only lead to confusion. If we take it that our benefits system pays out more to the physically ill than to the mentally ill and likewise the medical insurance companies, then one might try to save them money if they, rather than the patient, were the first concern. Could there possibly be some conflict of interest in the psychiatrist’s statement?
Leaving all these financial matters to one side, it is interesting that the word “gain” should be used at all in considering serious illness. Had the gentleman ever considered the loss involved? When M.E. begins suddenly, it can be a bit like the first chapter of the Biblical book of Job. In one day the list of losses can be long and frightening: health, work, career prospects, financial independence, friendships, for young people opportunities for marriage and a home, plus a host of normal activities which are no longer possible. Certainly it is good to live in a country where some financial assistance is available to those who cannot work. But putting all the losses in one column and a life “on benefits” in the other, does the word “gain” readily spring to mind? Of course remembering those whose M.E. begins in a more gradual fashion, the end result is the same, the sense of what has been lost coming on more gradually.
The question has to be asked whether some people inhabit an altogether different realm from the rest of us, a place where parents actually strive to obtain all the complications of a sick child in the house, a place where previously happy, active people suddenly choose to live within four lonely walls, afraid to continue all the interests and activities, which hitherto brought satisfaction.
It would be good if those who influence the medical world could join the world we live in. Perhaps if they saw the loss, the sorrow and yes, the frustration of those who long for the life they once knew… perhaps they might express more compassion and less contempt.
It may be that someone will read this page who suffers from a long-term illness other than M.E, knowing well many of the losses referred to. Does the question then arise, “why do people with M.E. complain so much, as if they are the only ones whose lives have been turned upside-down by long illness?” The answer is that there is one extra burden reserved for M.E. sufferers. This is the fact that this illness is generally coped with without medical support or even acknowledgement of its serious nature. It is this which complicates management of the condition and causes so much distress to sufferers and their families.
© Jean Stapleton
A previous article by Mum, “An Illness called Cough”, is still available online here.