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An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache
by Paula Kamen
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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.
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