The Cruelty of Chronic Fatigue Syndrome and Fibromyalgia

It is a striking characteristic of Chronic FatigueBecause sufferers often "look well" or are able to
Syndrome and Fibromyalgia (CFS/FM) that peopleparticipate in some activity, it is common for
have such incredible difficultly in accepting thatassumptions to be made that 'they must be well'. As
someone with CFS/FM is really ill. While being assailedsymptoms fluctuate and energy levels vary, each
by hideous assaults on body, mind and an individual'sand every day is a separate challenge. People
very being, sufferers face yet more staggeringgenerally do not see the days spent carefully
obstacles created by the lack of true understandingconserving energy so a day out may be possible -
from other people. This is a very real situation thatthey are unlikely to witness the depressing
has to be faced by many sufferers, and can be adisappointment when a special day arrives and either
crushing impediment to improvement.symptoms flare or energy is simply insufficient.
Sufferers face a huge struggle in trying to conveyMost people that make hurtful comments or pass
the despair and helplessness felt when in the grip ofunfair judgement mean no calculated harm, however
CFS/FM, while being confronted with disbelief,even simple thoughtlessness can have quite massive
allegations of malingering or pathetic weakness, blameramifications on someone that is actually ill. Then
for bringing illness on themselves, insinuations that theagain, it can be astounding the number of people that
illness is purely psychological or just imagined, claimsquestion professional opinion or insist that they know
of attention-seeking, or any number of harshthe reason a sufferer has CFS/FM.
judgments rising from ignorance or lack ofPoor understanding and lack of sensitivity is not
compassion.confined to uninformed or unqualified people. Many
Many people can only relate to their ownsufferers cite cases of extreme coldness, rude
experiences, so are incapable of understanding.disrespect or offensive dismissal from medical
Others are unable to see beyond the superficialpractitioners, medical personnel, therapists or other
veneer of "you look well". Some insensitive, some'professionals'. "It's all in your mind" or "just get over
only self-interested, some just bored or impatientit", accusations of hypochondria, delusion, laziness and
when you are not 'over it' quickly, some justself-absorption have been thrown at sufferers of
incredibly thoughtless, cruel...CFS/FM.
"Are you better, yet?" is a question that is oftenAs a syndrome with mystifying causes, bewildering
asked of a CFS/FM sufferer and, despite itssymptoms and no proven cure it seems easy to
frequency, can be a very difficult question to handle.dismiss CFS/FM as 'not a real illness'. The reaction is,
It is a hurtful reminder of an incredibly unpleasant,understandably, for the sufferer to hide away from
intrusive illness without an effective end in sight. Howunkindness. While in the worst phases of CFS/FM,
does one point out that it is an illness without a cure,little else possible. Isolation and feelings of helpless
politely? How does one explain that they may lookhopelessness can be significantly extended due to
fine but feel as if they are crumbling away inside,the perception that no one other than a fellow
without sounding pathetic? And how does a sufferersufferer can possibly understand the daunting
convey the despair of waking each and everyexperience of CFS/FM.
morning knowing they are not yet 'better'?CFS/FM is not a fatal illness. Sufferers' are generally
More often sufferers cannot articulate anythankful that this illness is not as threatening or
explanation at the time, and sometimes not evenpossibly as painful as progressive or terminal
some time afterwards! Sensitivities may be especiallyconditions. With no intention of taking anything away
tender or general outlook significantly depressed;from others' suffering, whatever that may entail, CFS
there may be some guilt about imposition on othersFM sufferers simply seek acceptance and some
despite it being beyond the sufferer's control. Theunderstanding.
affects of this illness can cause abnormal reactions.For people to do some simple, easy research about
However, would the same people ask this questionCFS/FM before offering opinions would go a long
of someone they knew had an incurable disease, orway to providing a little positive support to sufferers
of someone who could no longer walk?and their carers who already have sufficient burdens.