Fibromyalgia and Chronic Fatigue Syndrome. Coping With Chronic Disease.
It is so debilitating that it has been assigned the same disability rating as heart disease patients, stroke victims and chemotherapy patients.
For many reasons you will now be facing significant changes in your life. For a start, during the course of any chronic illness such as this you will find out who your real friends are.
The reality is, i'm afraid to say, that you will lose friends and colleagues along the way to the chronic diseases Fibromyalgia/CFS.
Do not try to explain this condition in any depth 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 to what extent you are suffering.
For these particular conditions where there is a specific stigma attached, this is normal. Accept it as such and you will not be personally offended by acts of prejudice.
Let us examine the common sequence of events as they affect the majority of sufferers. This will help us understand the prejudice from an onlooker's perspective.
You had a viral/ bacterial/ chemical exposure of unknown cause, exactly the same sort of exposure as happens to millions of people throughout America and the rest of the world every week.
For some bizarre reason that no-one can explain with any confidence, you have felt generally ill and exhausted with multiple shocking symptoms and multi-systemic breakdown ever since.
Your doctors appear 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.
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?
You see? Its human nature, it's cruel but there it is!
The question is - how can we as sufferers cope and rationalize what has happened to us?
First and foremost, knowledge is power. Educate yourself about your condition.
Concentrate on yourself and try to forget about the people that you have lost along the way.
There will be "fair-weather" friends who do not stand by you. Often 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 had to go due to your illness, and therefore the requirement for the friendship has gone as well.
This is okay! 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 person.
What goes around comes around and all that matters at this moment 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 screaming that its wisdom and knowledge you could well do without.
But there it is, 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.
Having plumbed the depths of pain and despair, in the future you will be back scaling the heights of success, freedom, and achievement.
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 be perfectly placed to chuckle and dismiss the vanities, selfishness and arrogance of our lifestyles, systems and cultures.
Fibromyalgia/CFS creates emotional havoc for you and for your loved ones. This is normal. It is NOT terminal. In the majority of cases with the right intervention, good improvement is made over time to resume a relatively normal life.
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 is truly awful. 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 truly is a disease 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 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? these are the type of thought patterns that we may express 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 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 foreboding.
Anger is a very common emotion
o Why me?
o Why now?
o What have I ever done to deserve this?
Unfortunately this anger alienates those we love even more.
You will find supportive people, often the last people you would actually 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 moment.
Do not feel bitter towards people who you lose at this stage, hold on tightly but let 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 the benefit of 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.
Once you have found a good support group you will also find good counseling.
However you do NOT need to see a psychologist unless you are being referred for Cognitive Behavioral Therapy, as your illness is NOT depression.
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 nervous pain with sleep disturbance, or you suffer from psycho social stress.
Mental and emotional preparation, knowledge of your condition, and the correct course of treatment are all essential and work symbiotically to assist your recovery.