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Not with a Bang, but a Whimper
<ts eliot>

by Pat Fero, MEPD

Each year, I talk with hundreds of professional women now disabled with chronic illness. As strangers, we discuss medical symptoms and treatments. I ask questions. I listen for the disconnect from information exchange to the word, and the tone that will take us to common ground. Sometimes women sense that I am waiting. Can we talk about loss of health, career, money, relationships and self-esteem? Can she say, I have no where to go, the house is a mess, Im not dressed, and I dont know what to do with my sorry self within these four walls?

Sometimes I disconnect when I know another sad story is about to unfold. I welcome anger, but rarely hear it. I hear whispers speak the language of guilt, blame and shame, a personal hell worse than the physical symptoms of pain, exhaustion, and loss of physical and mental abilities.

I think back to Womens Liberation. A photo sensation planted two seeds, one of the dark haired, pony tail young woman dangling a burning bra amid a crowd of sisters, and the second, my shivers, and my anticipation. I was 20 and could be what ever I wanted to be. So, we became doctors and judges and political analysts and business executives, we chose not to have children, and to follow those roads least traveled by women.

Millions of these women, now middle aged and suffering with a chronic illness are little girls once again. Be good! Be reasonable! Dont ask silly questions! Look pretty. And for gods sake, dont complain!

What the hell happened? The thing that haunts me is that these women have a powerful anger, but its anger turned inward, subverted to sadness and self-loathing. Where did we slip up? Is this happening to all women? Is it the nature of chronic illness? Is it the particular patient population? Those with Myalgic Encephalomyelitis, Fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivities, Post Polio Sequalae, Lupus, and Lyme, are my sisters, my patient population. Are we millions not representative of women in general?

Reading the medical literature, one might think these women have personality defects not apparent to a commoner like me. With all due respect to medical scientists, clinicians, and much of the public, I challenge that collective view. It is easy to disregard me, to blame me and contribute to my feelings of worthlessness if it is my fault that I have a chronic debilitating illness. It is also a dysfunctional attitude which is bigotry cloaked in pseudo science. Further, and most frightening to me are the vast numbers of therapists who tout self help books and tapes which encourage women to accept, hush and walk away from conflict.

Stress....stress, your body cannot deal with stress, dear. Just walk away and go blow out candles. (A well meaning nun told my aunt, 10 hours into labor, to pretend to blow out candles on the altar. What my good Catholic aunt screamed at the nun is not fit for print, but it is hysterically funny and I chuckle.)

Breathe, honey...use those lower abdominal muscles. What did you say? You get dizzy? Well, practice. Its deconditioning, Im sure. Remember, listen to your tapes, read a passage every morning from Living Todays Moment and dont forget to journal this week.

When self-help techniques were coming of age, I was teaching self-help, healing strategies to troubled high school students. I understand the necessity of developing self-awareness, finding safe self-passage in a sea of problems and moving on. I know that being victimized by events keeps the self hinged to the trauma and prevents triumph over terrifying and paralyzing emotions.

However, I think that the victim-survivor mental health language and subsequent therapies have turned ugly for my sisters, this patient population of mostly women. Survivors, overcoming insurmountable odds, claw their way to the top to win the prize. Victims, the losers, are bottom feeders and like it that way.

We are submerged in the language of winning and losing. Winning women can kick butt, outwit, outsmart and outplay. Is this empowerment? Is this liberation? Its good versus evil. Its the strong versus the weak and certainly, it is Us against Them. So, what does that make me when I am unable to walk a block without hurting and feeling faint? I break out, not in a sweat, but in herpes that go from my upper lip to my nose. I have very low blood pressure and immune system irregularities. So, am I the Weakest Link? Off the team I go and I am no more worthy than a carp. And according to recent self help books, tapes and videos, my problem is that I have too much old baggage Id rather hold on to (illness behaviors get attention) and it is for this reason, I cant get better. Dont you see that its my fault and I deserve what I get?

With my photo sensation, my image and my shivers, I will not acquiesce to the attitude that the best I can do is somehow cope (sigh), think of babbling brooks and hum the Cinderella song. In my own little corner in my own little house I can be what ever I want to be.

I fear that the Us vs. Them mentality pervasive in 2006 spills onto all women. We are in worse shape than pre 1960 when the expectations for women were clear -- You will bloom inside this box, and do not flower far from the field. Now, the expectation is to follow your dreams, to do, to make a difference in the world, and for heavens sake use the collaborative skills god gave the female sex. HOWEVER, cross over from health into illness and a woman learns all too quickly that she is a once again a little girl without knowledge of her own body. How can she possible know what she is feeling? Can she accurately identify symptoms? Perhaps she is type A, anxious and a touch hysterical?

I want women to look carefully at self-help materials and support groups that teach stress reduction. Simply imagine yourself clad in trousers, suit coat and tie. Listen with your male self. If you think that the strategies proposed would be good for you, they probably are. On the other hand, if you must refrain from a giggle or a whopping belly laugh, be wary! Rarely are men encouraged to adapt submissive behaviors. Trust your gut!

This pabulum spews from the mouths of knowledgeable empowered women. The message is a very sophisticated version of be a good girl, be reasonable, dont ask silly questions, look pretty, and dont complain! It will sound more like - I am woman hear me roar.... but not until you calm your inner self and touch the heart of the child within. Pabulum. Trust your gut!

Pat Fero, MEPD
Executive Director
WI CFS Association, Panda Project