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 .images_147

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.Penguins

8 Responses to “Fibromyalgia: The Mark of Shame?”

  1. Valda Garner says:

    Hi Barbara. I really identify with your post about Healthy Privilege. I too have many chemical sensitivities and have blepharitis so I am able to use only one face lotion that seems to agree with me and very little cosmetics. I am currently trying to get an appointment with Barrow Neurological Institute in Phoenix, AZ, because I have muscle wasting in my legs, feet, arms, hands and face in addition to all my other symptoms. In fact a person I haven’t seen in a while complimented me for losing weight. What she actually saw was the muscle wasting in my face. So it seems that I probably do not have fibromyalgia, but a disfiguring musclular disease. So I went out and bought some shorts, which I haven’t worn in several years. I’m going to show off my disfigurement and be cool and comfortable. It is really unfortunate that our culture doesn’t value older people. It’s a sign of a superficial culture. It’s an eye opener to get older and be chronically ill and not be able to keep up with the rest of the world. Even those friends that know I am ill will ask me what I’m doing with my time as though I should be accomplishing great things with all the time I have on my hands. We certainly do find our inner strength, our respect for oursleves, and develop a peace with our vulnerabilities. Thanks for a great post. Warmly, Valda

  2. Thank you Valda:
    I hope you have that appointment soon to find out what is actually going on with your muscles.
    Isn’t it interesting that when we lose weight we are congratulated on it even if we didn’t need to? The more skinny a woman is the more beautiful. Have you seen the sizes oo? What does that mean? A woman can be no size??? Gone are the Marilyn Munroe, Sophia Loren sizes of 12 or 14. Yet who cares to find out what we are going through on the inside? That isn’t to say that obesity is healthy but who has defined the ‘ideal’ when all those young girls are suffering from anorexia?
    Ah, so much to struggle with and we have to try to aspire towards unrealistic standards.
    Take good care and hopefully you will have some answers soon,
    Barbara

  3. Hi Barbara – I’m late discovering this wonderful June article, but delighted because ‘great minds think alike’ – I’ve been writing about precisely the same theme lately (those anti-aging societal influences out there!) My post called “Why I Decided to Start Loving My Grey Hair” is scheduled to run on Heart Sisters on August 3rd.

    Thanks for mentioning my post about Healthy Privilege, too. I love what Dr. Ann Becker-Schutte is writing about on this profoundly important subject – she somehow managed to articulate what I’d been thinking about but didn’t know there was already a name for! Here’s a direct link to more about her work: http://myheartsisters.org/2013/04/13/healthy-privilege-when-you-just-cant-imagine-being-sick/

    Thank you again, Barbara!
    hugs
    C

  4. Thanks Carolyn.
    I already read your blog and it is wonderful, as usual, and the many comments are so interesting to read!
    xo

  5. Mary Sue Joyce says:

    I have been reading your blog, and find it one of the most informative and well researched on FMS & related problems. I’ve been dx with fibro since 1995, and probably had it most of my life. I have meditated & exercised since the 70′s, ways that I’d found to help calm an over active (i have also been dx with ADD) and over sensitive brain. I am currently on 6 different prescription meds, and many over the counter meds & supplements. Prior to a total shoulder replacement last January, I had been functioning well, doing group exercises 5-6 times a week. (I also have DJD & osteopenia.). I took a buy-out type of retirement in 2001, and returned to school, becoming an RN in 2010. Partly because I had always “felt” that should be my calling, & partly to try & figure out what was going on in my own body & mind, and what meds & supplements were the most beneficial to me. I did work as an Rn for a few years, but was forced to take sick leave/quit when the pain in my shoulder became too great to ignore.
    Since May, my shoulder joint has been well, with almost full range of motion returned. BUT….being unable to go to my group exercises, and the rest needed for rehab, I have experienced a full blown flare, loss of an inch in height (8yrs post menopause), and severe low back pain that continues the visits to my pcp, rheumatologist, gynecologist, physical therapist, pain doctor, and psychologist. I am slowly again, climbing out of the flare! (Very slowly). As I get older it gets harder each time. I have an extremely hard time getting ready to leave the house, problems deciding what to wear, what to do with my hair etc. makeup hurts!!! My bras & clothes hurt!!! The ponytail I usually resort to hurts after 30 mins. It is extremely hard to get going in the am & to sleep in the evening. I cannot find a support group. I cannot find exercise at my level (being 61, & relatively fit & in shape for my age). So I meditate (or try) & move as much as I am able. My family are all extremely educated, but none have fibro or chronic pain. They think I just gotta get back to work & keep busy, they wonder why I don’t take care of my appearance like I used too, etc. I cannot keep telling them I have fibro, it’s to hard to hear their answers..So thank you for letting me rant on & on. I will keep trying to push toward remission. Your blog is extremely helpful, as I realize that I am not alone in this!

  6. Thank you so much Mary Sue: Your comments are not unusual. So many wonder at this invisible dis-ability because we look ok from the outside. Pain and fatigue are so debilitating and it gets worse with aging. Trying to do moderate exercise, work, spend time socializing and sometimes just getting through the day is often more than we can handle. It is difficult not judging ourselves as inadequate. We have to learn to be kind and gentle with our own limitations. I wish you the best,
    Barbara

  7. Ann says:

    In regard to Mary Sue’s comment about ponytails hurting, I have developed a similar problem with typical ponytails, but I’ve found that when necessary, I can feel okay with a very low loose ponytail.
    ‘ultra-low’ ponytail at nape of neck: http://i0.wp.com/www.fashionisingpictures.net/fashiontrends/ultraponytail.jpg — vs typical tight ponytail in mid/upper back of head: http://www.hothair.co.uk/images/P/xpress_p_new.jpg
    Hope this helps someone. :-)

  8. Thanks Ann: And for the pictures :-)
    Barbara

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