“After a traumatic experience, the human system of self-preservation seems to go into permanent alert, as if the danger might return at anymoment” , Judith Lewis Herman
There has been a great deal of public awareness of late regarding the concept of Post Traumatic Stress Disorder. It seems as though the syndrome has become somewhat commonplace and many are quick to self diagnose. But, even more are recognizing that the condition is one caused by great stress and chronic anxiety and there are commonalities among us in our responses to traumatic experiences. What was once associated with abuse, now is believed to be the result of many occurrences that bring about dramatic memories, which in turn trigger danger to an overly stimulated nervous system. With the relatively recent wars in the Middle East whereby PTSD among veterans became all too common, public awareness has been heightened. In my book I discussed fibromyalgia in relation to what was then becoming known as Gulf War Syndrome, now it is more specifically known as PTSD that is capturing the attention of the experts. In the first world war it was known as shell shock. In the second world war it became known as battle fatigue, finally it is now more appropriately labelled as PTSD. Many of these veterans with PTSD have fibromyalgia, in fact I speculated then (and do so now) that they are one and the same thing. I will acknowledge there is the possibility that they are somewhat separate but akin to identical twins. The symptoms are identical.
“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods I wanted to write this blog with great haste in protest for whomever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now to be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms which make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial and hormonal causes have been on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
“Men are from Earth, women are from Earth. Deal with it”, George Carlin
To-day one of my favourite comedians died. I shall miss his humour and while I obviously agree with Carlin’s view that both men and women are from earth, I cannot be quite so cavalier about dealing with many known differences. Sensitivity and empathy, for example, are human emotions that are often expressed very differently among men and women and both of these affect or may even be responsible for fibromyalgia.
There can be little doubt that fibromyalgia has become very prominent as a serious social and personal condition that affects primarily women. In fact, it is said by some that it is an epidemic of great proportions. Loss of work, physical impairments and challenges, intense pain, decreased income for many, increases in medication consumption, burdens on the health care systems and family disruptions are among the many serious outcomes of this debilitating syndrome. The numbers of people, mostly women, often middle age-aged, who suffer from this condition far outnumber the numbers of those who suffer from such a horrific life threatening disease as HIV/AIDS, even though fibromyalgia is not in and of itself a threat to life. While I do not suggest that comparisons should be made, or pitting one bitter struggle against another, nonetheless, both HIV/AIDS and fibromyalgia suffer from social stigma, as did the tuberculosis epidemic of decades ago.
Among the interesting facts about FMS is that the numbers of people affected are not precisely known; many go undetected or underreported. There is no ‘scientific’ test with which to make a diagnosis, unlike other epidemics, such as the relatively recent SARS scare that Canadians experienced; nor is the general public afraid it can be ‘caught’ from others. However, like many other epidemics there is a degree of shame with admitting one has this condition as there are many skeptics who do not believe the syndrome even exists. Physicians are generally loathe to ascribe the label and yet, fibromyalgia and the ‘symptoms’ are universal across countries, cultures and various ethnic groups. Morever, it is a condition that affects mainly middle-aged women. It has become a label that people are stigmatized with and not anxious to advertise about being one of its sufferers. I theorize that is because it has become known as a ‘women’s disease‘, based upon perceived undesirable weak personality characteristics of females. Equally as interesting is the Gulf War syndrome which I equate somewhat with fibromyalgia in my book. The veterans with this condition are often stigmatized as well. Are they also perceived to have ‘peculiar’ mental conditions that show signs of the so-called ‘weaknesses’ of women? There are many questions to be asked regarding why conditions that are invisible to medical testing are considered to be non-existent to many.