I stated in my introduction I will start this chapter by reiterating
that I firmly believe this condition to be one of the worst afflictions
that can strike a human being, at any age and at anytime.
It is in fact so debilitating that it has now been
assigned the same
disability rating as heart disease, stroke victims and chemotherapy
will be a pivotal point in your life. You will find that during
the course of your illness you will find out who your real friends
There is no point in my disguising the reality, which is, I’m afraid to
say, that you will lose a lot of friends and colleagues along the way
to the monstrous disease that is Fibromyalgia/CFS.
It is NOT possible to explain this condition to people who have no
experience of it either by having suffered, or, having a particular
medical interest in this arena.
Friends, family and colleagues WILL STRUGGLE to understand what or how
much you are suffering.
Again, I’m afraid this is the norm. Accept it as such and you will not
be personally offended by acts of prejudice.
Easier said than done I know.
Let us examine the common sequence of events which pertains to the
majority of sufferers, as this will help us understand the prejudice
from an onlooker’s perspective.
You had a viral/ bacterial/ chemical exposure of unknown etiology
(cause), just the same sort of exposure as happens to millions of
people throughout America and the world every week.
For some bizarre reason that no-one can explain to you, you have felt
generally ill and exhausted with multiple appalling symptoms and
multi-systemic breakdown ever since.
Your doctor appears cynical and can’t give you an adequate diagnosis or
prognosis so you may by now have been referred to a psychologist for
analysis with a suspected depressive incident.
“Hmmm okay!!” people are saying.
Ask yourself this question.
If you had no knowledge about Fibromyalgia/CFS what would your reaction
be to this sequence of events occurring in someone else?
Its human nature, it’s cruel isn’t it?
So how do we as sufferers cope and rationalize what is happening.
First and foremost, remember that knowledge is power. Educate yourself
about your condition.
Concentrate on yourself and try to forget about the people that you
Those that do not stand by you, and there will be some are what we will
term “fair-weather” friends. They are usually activity-based they were
primarily your friends due to your common interest in a certain
activity, be it sport/ work/social activities etc.
The activity has gone due to your illness, therefore by association so
does the requirement for the friendship.
This is okay!!….because we are going to get you to a stage where you
can resume the activity, you can forgive those “acquaintances” if you
wish and resume the activity with them as before, you will also be
wiser and more aware of “the type” of friendship you have with this
What goes around come around and what is going around is that you are
going to get better!!
There is a consolation that I allow myself sometimes, albeit
double-edged, and this is the level of self-knowledge and wisdom that
you will gain from this painful journey.
It’s a small consolation I know and I hear most of you
“Its wisdom and knowledge I could well do without”
But it is there and when you do come out of the other side in the
following weeks and months what you will have been through will make
you infinitely stronger.
You have plumbed the depths of pain and despair and in the future you
will be back scaling the heights of success, freedom, and
If you come through this and you will, nothing in life will ever faze
you again. You will value the simple things in life. You will live
every day. You will scoff and chuckle at the vanities, selfishness and
arrogance of our systems and cultures.
Fibromyalgia/CFS creates emotional havoc for you and for your loved
ones. This is normal. It is NOT terminal. It IS transient.
Becoming chronically ill is very much like a bereavement. The losses
and emotions involved are very similar. Giving up works means not only
that you lose income but you also lose status, friendship and a
purposeful role in life.
Fibromyalgia and Chronic Fatigue Syndrome encompass the full range of
human emotions and magnify the negative ones ten-fold.
This disease really is a monster. The usual response is to want to hide
away from the world. Confronting these emotions can be very important
as part of your psychological rehabilitation which should be addressed
in conjunction with the manual therapy discussed later.
This really is an arena where a healthy mind can assist a healthy body
towards a better recovery.
The pain that comes with Fibromyalgia/CFS can be
frightening and this
in itself can cause fear, loneliness, isolation, panic and
Fibromyalgia and Chronic Fatigue Syndrome can create a fear of
rejection by others even when there is no evidence of this happening. I
mean, “who wants to be around someone who is like this”, are the type
of thought patterns that we may express.
Again this is a normal reaction, our self-esteem is based on what
others think of us, and usually that is based on what we “do” or “how
we play”, or “what we say”, generally how we interact with other
As we take to “doing less”, “playing” less and generally interacting or
“saying” less, then our self-esteem plummets along with our health.
We are worried about the future; the dark shadow of uncertainty is
round every corner.
Will I ever get better?
What if I don’t?
How long is this going to go on?
We ask ourselves these same questions every day.
We begin to experience life in a shadow land. Our hopes and dreams have
been shattered and the road ahead can be bleak and never ending.
Anger is a very common emotion
• Why me?
• Why now?
• What have I ever done to deserve this?
Unfortunately this anger alienates those we love even more.
You will find supportive people, often, and encouragingly the last
people you would expect, those who are supportive are often people, or
those close to them, who have experienced serious illness and are
living with it, or have themselves come through it.
Or, those who have experienced Fibromyalgia/CFS or have someone close
to them who has it. These are the people you should aim to spend your
limited energy and resources building relationships with for the
Do not feel bitter towards people who you lose at this stage, hold on
while you can, then just let them go lightly, they are not your problem.
Fibromyalgia/Chronic Fatigue Syndrome IS your problem, and fighting it
hard is your duty to yourself, to get your health back, for you and
your loved ones.
You are going to need the energy you have left for this fight.
I do advocate counseling and support groups. You will need to find
someone who has specific knowledge about the emotional effects of
Fibromyalgia and Chronic Fatigue, again a good doctor should be able to
put you on the right path, there are also Fibromyalgia/CFS support
groups based in most cities and towns across the US.
Once you have found a good support group you will also find good
However you do NOT need to see a psychologist unless you are being
referred for Cognitive Behavioral Therapy, as your illness is NOT
Similarly you should not blindly accept a prescription of
anti-depressants, with the exception of possibly low dose amitriptyline
or klonopin if your symptoms include severe nervous pain with sleep
Mental and emotional preparation, knowledge of your condition, and the
correct course of treatment are all essential and work symbiotically to
assist your recovery.
Clive L. Haslam, (B.A, M.Sc, PgDip)
CFS/ Fibromyalgia Research.
CFS/ Fibromyalgia Sufferer.
Fibromyalgia/ Chronic Fatigue
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