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.

While I decribe in great length the reasons why I believe women are more prone to fibromyalgia in my book, I am still unable to find others who have reached the same conclusion that I have. In fact, with the new Lyrica medication now being advertised on television, the doctors who even question the very existence of fibromyalgia have become more vocal about women who complain and are unable to adapt to pain. In a recent article of the New York Times, January 14, 2008, they ask if the ‘disease’ is real? Once again I submit that fibromyalgia is not a disease, but a dis-ease of highly sensitive persons. Happy as I am because the American College of Rheumatology has recognized it as a ‘diagnosable disease’, I am saddened that it is considered a disease, searching for such things as a viral cause, without recognition of the social conditions that precipitate fibromyalgia.

Those medical disbelievers cited in the New York Times should walk in our shoes and then ask themselves if we are just weaklings or women with unusual intuitive, sensitive, and empathetic gifts that have over-stimulated our nervous systems. These are the kinds of people the world could benefit from if there were more of us!

Perhaps we are the canaries in the coal mines, rather than people who do not ‘adapt’ and are ‘chronic complainers’. It is easy to understand how our nervous systems have become over-stimulated given the ways in which women are expected to function in societies where women’s gifts  of sensitivity are demeaned and stigmatized.

5 thoughts on “The Stigma of Fibromyalgia, a Women’s ‘Condition’

  1. Joan Evans

    It’s great to see the social and gender dimensions of fibromyalgia being highlighted. We don’t live our lives in a social or political vacuum and this is particularly true for women who perform so much of the emotional work in our culture as they care for and about others. The implications for health are significant.

  2. Marco

    I am a male and the bread winner for my family suffering with this condition. I am 30yrs old and I can trace my symptoms as far back since I was 13 years old. I also often times feel ashamed to share the fact that I suffer from this condition with others. I feel somewhat guilty when I have to tell my wife that I just cannot handle some chores around the house. I do feel ‘weak’ and incompetent at times which leads to depression. I do feel emasculated at times. Thank you for your thoughts on the subject.

  3. Barbara Keddy Post author

    Dear Marco:
    I am honored that you have chosen to write about your guilt with this condition. I suspect there are many very sensitive, thoughtful and empathetic men out there who are ashamed to admit that they live with this invisible condition. The way in which our society is set up is that men are supposed to be always in control, yet all of us with fibromyalgia experience the same thing: how do we continue day-to-day when we don’t have the strengh to do it without help from others? Then the guilt sets in. After all, we look perfectly healthy!
    ‘Controlling’ an easily aroused nervous system, our hyper vigilance and intense feelings of family responsibility is not easy. Only by speaking about it openly do we find some degree of relief. You are very brave as few men will do so, as noted from this web site of mine. A few have sent me e mails but chosen not to leave a comment.
    The fact that you even remember when you were 13 and had the first experiences is intriguing. Men and children with fibromyalgia present us with many questions to explore which have been badly neglected. Hopefully more men will begin to speak out.
    Like everyone I want more answers to this great puzzle and you are one of thousands who can help fill in some of the pieces. Thank you.
    Best wishes,
    Barbara

  4. Lianne Hicks

    There is nothing week about dealing with fibromyalgia, in fact I would have to say the complete opposite. It takes a strong person to deal with that amount of pain and still have some what of a life and not get depressed. I suffer from this for only a few years now, after having many injuries in a car accedent. I was told that that was what caused it. It does take alot away from your life. So we need to do what we can when we can. I have found the Lyrica does help with some of the discomfort but not really the pain it self. But has made me gain weight. But some releif is better than none. I think that anyone suffering from this is a very stong porson and any one who thinks that people with fibromyalgia are just sensative are saddly mistaken, and need to think about what it would belike to live in large amounts of pain for every day of their lives. I have always been a strong person and still am . and I still find it hard to move some days due to pain. But we all need to keep trying and not give up. Good luck to all!

  5. Barbara Keddy Post author

    You are so right, Lianne. Just getting up in the morning is often a chore but we are survivors and strong people. Keep on with this great attitude, Best wishes, Barbara

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