“Its not until we are lost do we begin to understand ourselves”, Henry David Thoreau
Several decades ago before I knew much about this demon called fibromyalgia, I diagnosed myself ahead of the long -awaited- for- official diagnosis from a neurologist or rheumatologist. It was early on when I adopted the behavior of those living with a chronic disease. I realized it would not go away and probably become worse with aging. I was ill and it was traumatic, living without respite from pain and fatigue. I was living with some small degree of hope that the scientific community would find a cure. I believed it was because I was a woman and as female we are marginalized. Furthermore, I believed the condition was all about the social construction of the female role, therefore there were so few men diagnosed with the syndrome.
It was in my first book that I spent my time dealing with the fact that being female and the female role that developed in society was primarily responsible for the development of fibromyalgia. While there is some degree of truth to that premise, gender is but one of three aspects of this root cause and even more to the point gender is not binary and cannot stand on its own as causation. I wrote in my second book that fibromyalgia is a bio-psycho-social issue that must be broken down in all its elements to give a more coherent analysis.
In this blog I would like to begin with the psychological root cause, rather than the social issues of gender as I believe it comes first. That is not to say that gender, sex and gender identities are not significant and interrelated/ connected with our psychological well being, only that I believe it is the ‘psycho’ that is first in setting the scene for our journey into the fibromyalgia realm of root cause. Furthermore it began in our developmental years, later to become a permanent fixture.
As I write I keep in mind the book The Myth of Normal by Dr. Gabor and Daniel Maté whose work has changed my mind about so many unknown ’causes’ of many invisible dis-eases. They write of childhood trauma and that each of us has some degree of it. This trauma could result from such perceived innocuous occurrences as being separated from the mother for a short period of time as a youngster, or more serious issues such as abuse as a young child. During the developmental years incidents of emotional pain remain with us and can be triggered at any time . I have searched long and hard to discover my own source of childhood trauma.
All of us with fibromyalgia suffer from a general anxiety disorder and our pain and fatigue can be triggered by memories that are buried deep in our psyche. So how did this happen? Were we born anxious? Did we inherit this “black dog of depression” (a quote from Winston Churchill about his own depression)? Anxiety and depression are siblings but which came first?
Those of us with fibromyalgia and chronic fatigue syndrome have characteristics that are similar- hard working, overly empathetic, care givers of others to neglect of our own emotional well being, highly sensitive, uncanny ability to read other people’s emotional states–were we born this way or did we develop these personality traits as we became adults? Was it nurture or nature? What are the roots of our development of this syndrome? We can only attest to these similarities in our ‘nature’ to earlier experiences of trauma in our young lives.
Recently there has been a somewhat renewed interest in fibromyalgia because of the death of Sinéad O’Connor who suffered from fibromyalgia. It has been reported that she was subject to frequent beatings as a child and as a result had neurodevelopmental damage from this childhood trauma. I believe it is impossible to escape fully from how you were raised. It seems like it lives inside you always, haunting your conscious or unconscious thoughts. William Faulkner is quoted as saying: “The past is never dead. Its not even past”. While many can keep childhood trauma hidden better than others, all of us with fibromyalgia exemplify various aspects of this demon when we are triggered. There are many who will disagree and are vehement that they had wonderful childhoods. The difficulty is in admitting that such a perfect beginning of our lives does not exist for anyone.
It is part of the healing process to find the time amidst our pain and fatigue to cogitate about our life history. If possible a ‘good’ therapist who can recognize our need for ‘talk therapy’ to unravel how it is that we developed this condition. It isn’t a quick fix and will be emotionally painful. If the cost of a therapist is too prohibitive a good friend who is able to listen to our probing of our developmental years could help, or we can do it ourselves albeit with more difficulty.
We must keep at it until we understand the root cause of the trauma to our central nervous system. It is the main first step to avoiding triggers which bring on those severe flares.