“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.
Reading the comments that are posted in the 99 blogs (this is number 100!) I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be cured of the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard :” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”, Maya Angelou
On June 3rd I heard a documentary on CBC radio talking about the mark of shame, the culture of shame and how it makes one feel. There is so much about the visibilities of women’s bodies that cause us to hide perceived imperfections, in particular the dyeing of our hair so as not to look old, plastic surgery to hide our wrinkles, over use of cosmetics, whitening of our teeth, even the marketing of products to enhance the colour of vaginas! We can never measure up to the standards set for us by the big businesses of the multi national corporations who prey on our insecurities. The cosmetic industry is constantly thinking up new ways to make us feel insecure and shameful if we do not keep up appearances of a youthful woman. We must always be thought of as sexually desirable dictated by our outward appearance. That isn’t to say that I am morally judging those who use whatever means they can to feel good about their outward appearance. Rather, it is meant to point out that we are often prone to hide the fact from ourselves that we cannot stay or look like we are in our 20s forever.While none of this understanding of women’s attempt to look like the Hollywood definition of beauty was any surprise or new to me, having taught in a women’s studies program for many years, nonetheless it got me to thinking about conditions that are invisible and about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.