Copyright 2006 Mark Shaw
I suffered from Fibromyalgia and Chronic Fatigue for 4 years before reaching a point where I am 90% better than I was at the beginning of the illness.
I will say from the outset that I believe this is one of the worst afflictions that can strike any person, at any age and at anytime.
Not only is it so debilitating that it now has the same disability rating assigned to heart disease patients, but at the same time you have to deal with negative connotations that surround it.
Even the name doesnt sound credible, “Chronic Fatigue Syndrome”, “what is that like a bad hangover or something” people will say. At a time when you need the most support in your life, often, people are turning their backs and walking away or muttering under their breath. It is a frightful condition.
This 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 are, and who really cares.
There is no point disguising the reality which is, Im afraid to say, that you will lose a lot of friends and colleagues along the way to the monster that is Fibromyalgia and CFS.
It is NOT possible to explain this condition to people who have no experience of it either by having suffered, or through having a particular medical interest in the area. They WILL NOT understand what, or to what extent, you are suffering. Again, Im afraid this is the norm. Accept it as such and you will not then be personally offended by acts of prejudice. Easier said than done I know. Let us examine a common sequence of events which may ring a bell with sufferers, to understand the prejudice from an outsider perspective.
You had a viral/ bacterial/ chemical exposure of unknown etiology, the same as happens to millions of people throughout America every day, and for some reason that no-one can explain to you, you have felt generally ill and exhausted with multiple symptoms and multi-systemic involvement ever since. Your doctor appears cynical and cant give you an adequate diagnosis so you may by now have been referred to a psychologist for analysis as a suspected depressive incident. hmmm okay you hear them mutter.
Ask yourself this question.
If you had no knowledge about Fibromyalgia and CFS what would your reaction be to someone else developing these symptoms?………… You see? Its human nature, its cruel isnt it?
So how do we as sufferers cope and rationalize what is happening.
Knowledge is power. Educate yourself about your condition.
Concentrate on yourself and try not to dwell morbidly over the people that you have lost already. Those that do not stand by you, and there will be some, are what we term fair-weather friends, usually activity based they were your friends due to your common interest in a certain activity, be it sport/ work etc.
The activity has gone due to your illness, therefore by association so does 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, you will also be wiser and more aware of the type of friendship you have with this person.
What goes around come around and what is going around is that you are going to get better!!
There is a small consolation that I allow myself, and this is the level of self-knowledge and wisdom that you will gain from this painful journey. Its a small consolation I know and I hear most of you screaming, its wisdom and knowledge I could well do without, but it is there and when you do come out the other side in the following weeks and months what you have been through will make you ten times the person you were before.
You have plumbed the depths of pain and despair and in the future you will be scaling the heights. If you come through this nothing in life will phase you again. You will value the simple things in life. You will live every day. You will scoff at the vanities and selfishness of our systems and culture.
Fibromyalgia and CFS will create emotional havoc for you and for your loved ones. This is normal.
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. However, 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 area where a healthy mind can assist a healthy body towards better recovery.
The pain that comes with Fibromyalgia and Chronic Fatigue Syndrome can be frightening and this in itself can cause fear, loneliness, isolation, panic and anxiety.
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, we say to ourselves.
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 people. As we take to doing less, playing less and generally interacting 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 dont? How long is this going to go on? We ask these 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 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 come through it.
Or, those who have experienced Fibromyalgia and Chronic Fatigue Syndrome or have someone close to them who has it. These are the people you should aim to spend your limited energy resources building relationships with for the moment.
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 and 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 and 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 counseling.
However, the majority of cases will NOT need to see a psychologist unless you are being referred for Cognitive Behavioural Therapy, as your illness is NOT depression, and therefore you should not accept anti-depressants, with the exception of possibly low dose amitriptyline if your symptoms include severe nervous pain and sleep disturbance.
However I cannot personally vouch for this but there is enough evidence to suggest is a valid treatment.
Mental and emotional preparation, knowledge of your condition, and the correct course of treatment are all essential and work symbiotically to assist your recovery.
In my next article I will explain new research which is allowing us to determine how genetic and biomechanical anomalies, predispose certain individuals to attacks of Fibromyalgia and Chronic Fatigue Syndrome.
Dr Mark J Shaw