I hope also to reveal some complexities of the experience. Most popular health books, including those on headaches, are of the self-help variety, written by a doctor or New Ager with a single limited agenda or practice to promote. They typically sell a one-size-fits-most perspective of pain relief, a variation of Ten EZ Steps to Total Health and Enlightenment. And many of the health stories that do exist from a patient's perspective, such as in articles in women's magazines, follow a preordained formula to recount the valor, and ultimate triumph, of rich and famous celebrities. According to these media narratives, we are all supposed to be like Ronald Reagan, riding away on a horse days after his surgery. Or Christopher Reeve, directing a film right after becoming paralyzed. Or Lance Armstrong, winning six consecutive Tour de Frances, after battling a very advanced case of testicular cancer. In contrast, patients with more invisible, yet still often disabling, chronic illnesses, which characteristically hit young women, from chronic migraines to fibromyalgia to rheumatoid arthritis to vulvodynia (vaginal pain), see their less dramatic problems hardly covered at all.
But telling more realistic and sobering stories such as mine can be just as powerful and, ultimately, hopeful. This telling raises the social awareness of chronic pain as a major unresolved public health issue and gives both doctors and patients a more effective and down-to-earth grip on this problem. The fact that our culture often glosses over the complexities and difficulties of chronic pain only compounds the suffering, self-blame, and isolation of patients like me. We believe the uniquely American work ethic, as applied by alternative medicine, that if you just work hard enough, you will get better. When we don't, we think it's our own fault. Perhaps there is a psychological issue we aren't dealing with appropriately, perhaps we aren't listening to our soul's code, or perhaps we are suffering a waxy yellow buildup of the chakras. We also believe the credo that doctors actually know everything about stopping pain, and that if they can't cure you, the problem must be yours. As a physical therapist friend has told me, this is the only culture on earth that fails to accept chronic pain as a fact of life.
Sharing patients' real stories also sheds light on chronic pain as a women's issue, the focus of my past writing. Chronic pain mainly affects women, both in overall numbers and in accounting for those primarily affected by most types of pain disorders, including chronic migraine and head pain. Many studies show that women's chronic pain is seriously undertreated medically by not enough painkillers being prescribed, compared to the treatment of men with chronic pain. Instead of responding adequately, many doctors, therapists, and cultural critics dismiss it, using the catchall psychosomatic diagnosis of "hysteria," and overstating the influences of any contributing mental, emotional, and political factors. Many academics, even feminists, are in the business of talking about how our culture "creates" certain illnesses (such as chronic fatigue syndrome, a common target), but not about how strongly that same culture often denies them. This is a legacy that continues in full force a hundred years after Freud, denying major scientific discoveries of the past several decades, such as information gained through advanced types of brain imaging.
In our society, illness as a metaphor is an especially potent and pervasive force when that illness is "invisible," when it is experienced mainly by women, and when the causes are largely unknown. These forces all combine to form a recipe for the accusation: "It's all in your head." Ironically, feminists in the women's health movement, a separate branch of feminism that emerged fully in the 1970s, have not yet fought back significantly. In fact, they have largely avoided addressing the topic of women and pain, fearing that such attention will lend credence to the age-old disparagement of women as "the weaker sex," an attitude that has justified terrible discrimination.
From the preface to All In My Head, pages ix - xvi. Copyright Paula Kamen 2005. All rights reserved. No part of this book maybe reproduced without written permission from the publisher, Da Capo Press.
The Kopp Sisters Return!
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