Sufferers face a huge struggle in trying to convey the despair and
helplessness felt when in the grip of CFS/FM, while being
confronted with disbelief, allegations of malingering or pathetic weakness,
blame for bringing illness on themselves, insinuations that the illness
is purely psychological or just imagined, claims of attention-seeking,
or any number of harsh judgments rising from ignorance or lack of compassion.
Many people can only relate to their own experiences,
so are incapable of understanding.
Others are unable to see beyond the superficial veneer of "you look well".
Some insensitive, some only self-interested, some just bored or
impatient when you are not 'over it' quickly,
some just incredibly thoughtless, cruel...
"Are you better, yet?" is a question that is often
asked of a CFS/FM sufferer and, despite its frequency, can be a very
difficult question to handle. It is a hurtful reminder of an incredibly unpleasant,
intrusive illness without an effective end in sight.
How does one point out that it is an illness without a cure, politely?
How does one explain that they may look fine
but feel as if they are crumbling away inside,
without sounding pathetic?
And how does a sufferer convey the despair of waking each
and every morning knowing they are not yet 'better'?
More often sufferers cannot articulate any explanation at the time,
and sometimes not even some time afterwards!
Sensitivities may be especially tender or general
outlook significantly depressed; there may be some guilt about imposition on
others despite it being beyond the sufferer's control.
The affects of this illness can cause abnormal reactions.
However, would the same people ask this question of someone
they knew had an incurable disease, or
of someone who could no longer walk?