” My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves”, Socrates
Fibromyalgia does not allow for any kind of scientific tests to aid in making the diagnosis of the syndrome. It is not a disease, but a broad spectrum of ‘symptoms’ which appear to be somewhat universal, that is, primarily pain, fatigue, sleeplessness and often depression.
The official diagnosis was made in 1990 by a Committee of the American College of Rheumatologists, lead author Dr. Fredrick Wolfe, who has since suggested that it is actually a response to stress, depression and anxiety (quoted in Grot and Horwitz). While I subscribe to this view that fibromyalgia and its cousin chronic fatigue, along with other invisible dis-eases like restless legs (and autism which I have discussed in another blog) are not actual diseases, I also realize that there is a danger in classifying those of us with these conditions as hysterics who cannot manage our lives and have given in to the role of a sick person.
Nothing can be further than this in my attempt to understand how it came to be that those of us with FMS/CFS/RLS are highly sensitive to our environments/stimuli/other people’s needs. Yet, even in categorizing ourselves as highly sensitive persons(HSP) we risk the danger of further medicalizing ourselves (primarily through psychiatry) and becoming labelled as people who are in need of intense psychiatric help through medications. We can become labelled as HSPs and then fodder for the pharmaceutical companies and a category of the ‘mentally ill’. This is indeed a conundrum as we ARE highly sensitive persons with easily aroused nervous systems. The question to be asked: why is this a disease to be treated? Should we become like those who are treated for such real psychiatric disorders as for example, schizophrenia?
The book Diagnosis , Therapy and Evidence Conundrums in Modern American Medicine, by Gerald N Grot and Allan V Horwitz points out the lack of pathobiology in FMS, CFS, RLS and Autism, all of which have similar characteristics. The pharmaceutical industry has been the victor in all of this and we have fed into it unwillingly in our effort to alleviate our suffering, and obtain some degree of relief. So many of you write to me citing the numerous medications you are taking. The side effects are frightening. “What is to be done?”, a quote I use frequently from a favourite social theorist of mine.
I know of no other answer than that of the neuroscientists who have worked on strategies to change our brain. We can’t change societal views of people whose nervous systems are highly in tune with their environments, but we can (although very difficult) change ourselves. I have read recently that with the work of the scientists who are making tremendous advances in understanding the brain that this will be the first generation of people to be able to look into our own brains. IMAGINE! WE WILL SOON BE ABLE TO SCAN OUR BRAIN! Brain based therapy! We will be able to scan our brains for both positive and negative psycho-social emotions! And haven’t we done this in the past? A friend pointed out that mood rings (I had one!) then bio-feedback (I did that in the 1980s!) were both attempts to ‘read’ our emotions. While this scanning our brains may seem to be frightening to many (especially neuro-ethicists), it will be a relief to many of us, especially to me since I am usually entertaining thoughts of disaster. Maybe the time will come when I can change those impulses that lead to negative thoughts and images.
The amazing research and theoretical debates about the brain is related to the mystery of how we develop consciousness, and in the case of fibromyalgia, how does our consciousness relate to our real life experiences of pain? Philosophers, neuroscientists, psycho-neurologists, sociologists, neuro-ethicists are studying, researching and debating this mind/body relationship and the nature of consciousness. For those of us who are interested in finding out how our consciousness manages to get to our brains and communicate (that we are in pain), the whole world of science/philosophy is exploding in this regard. Not soon enough for me, nor very understandable for the general public (including me)! But this book may provide some easier to comprehend answers (Christof Koch, author).