Fibromyalgia: The Mark of Shame?

“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.

Fibromyalgia is a syndrome about which people often sigh and believe we should not indulge ourselves in lamenting about our pain and fatigue, as well as a myriad of other symptoms, rather we should just smarten up, ‘suck it up’ in order to feel better. I believe that health professionals are among the worst as the condition cannot be diagnosed through the usual medical tests and there is no known ‘cure’. But, family and friends also blame the ‘victim’, even though I hesitate to use that phrase as we are not actually victims. Of course this attitude of others makes us feel shameful about ourselves and the self critic, ruminating voice within believes we are malingering and should become less vocal about admitting we have such a dis-ease, that we are  asexual, and sickly creatures .

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The disdain that many health professionals and many of the general public portray to those of us with fibromyalgia can make us feel like we are hypochondriacs. The syndrome itself is a stigmatizing label all the more so because it is invisible and we look healthy. In her April 13th blog, Carolyn Thomas (www.myheartsisers.org) writes about Healthy Privilege. She quotes Dr.Ann Becker-Schutte who writes: “Many physical health conditions and all mental health conditions fall into the category of “invisible illness”.   Furthermore Dr.Becker-Schutte writes about those who are healthy and do not “see or understand because they have some degree of what I am calling healthy privilege”. I have found this to even more obvious now that I have two invisible conditions: fibromyalgia and heart disease.

Several years ago I decided to let my hair go grey and to not blow dry it straight as I did every day. I let it dry naturally and do not blow heat on my head, letting the natural curl do as it wants. I do not use make-up and use only moisture cream that does not have any of the nasty ingredients that are so dangerous to our health and cause so many sensitivities and itching. Eye make-up is not an option as I am sensitive to it and to light and my eyes will burn and water if I use cosmetics on them. I have gradually let go of all the social demands to try to look younger than I am. It hasn’t been easy. As I look back on these almost 100 blogs I am always stunned by the hundreds of comments on itching. Until I gave up on most cosmetics I too found itching to be a serious problem. I know many cases of women with serious allergies who continue to dye their hair and wear eye make up and other cosmetics that actually induce  itching and sensitivities. In fact, I have given in to the shameful, stereotypical view of the older woman who appears to no longer care about looking younger.  While I can do this to my bodily appearance, I cannot hide the pain and fatigue from myself but I do often hide it from others. It can be a sign of weakness of character to admit I have a hyper-aroused central nervous system. I don’t like this label. My casual appearance these days is amazing to many who do not know me intimately. I am told over and over how well I look; how natural I appear; how healthy I look; how I do not look my age.  Many  cannot understand that appearances are deceiving. The shame for me is that I relish these compliments. Why would I want to tell them I am suffering from post traumatic stress syndrome five months after a heart attack, that I live with pain and fatigue from fibromyalgia, that I am taking many medications for heart disease? I want to belong to the club of those with Healthy Privilege, not the clubs of those of us with an invisible disease of the cardiac sort who often induce fear in others about their own hearts, nor the  dis-ease of fibromyalgia which has a stigma attached to it. These are the challenges we face living with conditions that cannot be seen; how we handle them is a sign of both our vulnerabilities and our strengths.

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References:

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