My article about having ME/CFS.
Published in Adelaide: Disability, Information & Resource Centre Magazine. 1985
Disability implies that in some way the disabled person is deprived, deprived of the ability to do something that most people accept or expect as 'a right'. The right to be able to speak coherently, to express yourself as a person, to get up and walk away, to inhabit a normal house, to work in an average job situation, to eat what other people are eating, to love and to be loved.
For most people, to be disabled indicates a loss of physical function, the lack of which is clearly obvious to the onlooker. This creates an awareness, which brings immediate acceptance of that person's limitations and a readiness to give space, time and understanding for the disabled person to operate at maximum capacity, (at least I hope so, or am I being too idealistic?).
There are other people in the Twilight Zone. They are not obviously disabled, either to the average citizen or to the average professional, but are in some kind of medical limbo wherein they are deprived of either diagnosis or treatment. To be deprived of a diagnosis is a terrible thing, it leaves one open to many labels and adjectives - psychosomatic, functional, neurotic, hypochondriac, malingerer, difficult, Munchausen's Syndrome (this one is a beauty - it means you like going from Doctor to Doctor, and being hospitalised for tests, operations etc.) and the everlasting comment that your symptoms, however distressing, "are only anecdotal".
People suffering from this type of illness are often severely disabled, enduring varying degrees of isolation within the community due to severe reactions to foods and chemicals. These reactions cause much distress to the sufferers and their families, often causing job loss and considerable disruption in family circumstances. The hopelessness of their position is evident in some cases even to the point of attempted suicide.
A frequently repeated statement is 'I cannot go on like this'. Does this constitute disability?
Thank you, but no, I probably cannot come into your house, eat your food, accept your drinks, or breathe your air without becoming ill. Does this constitute disability? As a fellow sufferer, I can assure you, it does.
Audrey Brimson Excerpt from my book. 'Dear M.E.' Chronic Fatigue, Kundalini or Yuppie Flu? A Memoir of Mind, Body, Spirit
Written by Audrey Brimson