Category Archives: dis-ease

Fibromyalgia, ‘goodism’, self-sacrifice,”giving yourself away”

“Self development is a higher duty than self sacrifice”, Elizabeth Stanton

As I read more and more about brain mapping and how to change the pain mappings in my brain I am reminded about how intensely I wrote in my book regarding the highly sensitive person (HSP, according to Elaine Aron). This is the ’empath’, the person who senses what other people are feeling and takes on the emotions of others as though they were her/his own( I don’t mean this in the usual sense of the ‘psychic’ person, or in any mystical way). I still stand by that description of the person with fibromyalgia. We are like a toxic sponge! Now, I believe that this type of person (mainly, but, of course not solely, women) has the personality characteristics of the self sacrificing, doing good for others (what  Dr. James Rochelle calls ‘goodism’) and ‘giving yourself away’ (a term my physiotherapist coined). When I think of Florence Nightingale on this May day, her birthday month, suffering from fibromyalgia, I think of her as a primary example of self sacrificing.

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The Stigma of Fibromyalgia, a Women’s ‘Condition’

“Being a woman is hard work”, Maya Angelou.

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.

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