Conscious Choice Seattle: Not All In Your Head

July 2005 | The EM Column

Not All In Your Head

A new book illumines the way we think of women and chronic pain

By Silja J.A. Talvi

The way I saw it was as a weakness.

I certainly didn’t want anyone to think of me as weak, having learned the valuable lessons of the feminist movement.
Little did I realize that I had internalized this lesson to an arguably damaging extent. That is, until I came across Paula Kamen’s new book, “All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache” (Da Capo/Perseus). In the way that books like Andrew Solomon’s “Noonday Demon: An Atlas of Depression” helped to shed new light on the commonality and curious persistence of depression, Kamen’s book represents a leap forward in our understanding of the nature of women and chronic pain.

Kamen has been struggling with her chronic daily headache for over 15 years. In search of relief—“any kind of relief”—Kamen has subjected herself to nearly every kind of traditional and alternative medical remedy available to her. Nothing has cured her so far, although she has learned certain techniques and working styles to keep her pain from completely overriding her life. But even then, as she’s found, nothing is foolproof. She’s found no cure, and she knows that day may never come.

“Over the years, I have learned a lot about pain management,” Kamen tells me. “My old way of doing things was to push myself until I couldn’t function and then take months to recover. Now, I’m using my main coping strategy and tool of [pacing] to do less, such as going to fewer cities, scheduling only one or two things a day and going home and resting between trips. It’s more expensive this way, but only in the short run, since I’m not paying for it as severely when I return.
“This seems very simple ... but it took years for me to accept and learn. ”

I, too, have learned to try to slow my pace a bit; the biggest hurdle, in that sense, has been getting over the nagging feeling that I should always be doing more. In my case, it’s not a matter of coping with headaches but with fibromyalgia (FMS), with which I was diagnosed in 1994 after years of suffering a kind of mystery pain that no doctor took seriously.
As Kamen and many other chronic pain sufferers seem to do so often, I kept my pain to myself and went about trying every kind of remedy I could find, ranging from the holistic arts to trying a variety of antidepressants. The truth is that my FMS never went away. I, too, have learned that certain things are likely to set off the worst kind of pain: interpersonal stress, anxiety, the hunched-over position of bicycling (much to my horror because of my love of the sport), too much tequila and, yes, even changes in the weather.

A painstaking secret

The pain that I carry around with me on nearly a daily basis has, until recently, been a fairly large secret. A few close friends have heard me mention it maybe a couple of times, and most of my acquaintances have no idea about either my FMS or even my struggles with occasionally debilitating depression.

My daily struggle with chronic pain is honestly just something I’ve gotten used to and would have never even thought of writing about until I read Kamen’s book. On my better days, the pain in my trigger points is dull to a very low, almost imperceptible ebb. And on my worst days, the pain in some of those trigger points is so severe—and my mood so low—that I can’t bring myself to climb out of bed. On those days, I choke out tears of pain, curling into a fetal position with my favorite stuffed animal. At those moments, all I can muster is the will to believe that tomorrow might actually be a better day.

Rarely, if ever, do I actually reach out for help, especially where my FMS is concerned. That has felt like dangerous territory; if I admit my physical and emotional vulnerability, isn’t it entirely possible that I will be taken less seriously by my journalistic colleagues, to say nothing of the world around me?

It doesn’t seem like a coincidence that Kamen, too, is of the same generation that I am: the women in their mid-30s who have come into their own straddling both the second and third waves of feminism. Until recently, Kamen, like me, still had the residual idea that speaking the truth about one’s physical struggles is tantamount to some kind of admission of a fundamental weakness.

Not that it’s as if all of that is in our heads. Chronic pain sufferers know what it means to not even have our own doctors take us very seriously. The Freudian remnants of women’s psychosomatic hysteria are still alive and well, resulting in both the lack of diagnosis, misdiagnoses and inadequate medication of chronic pain sufferers.

Invisible women

As a result, our struggles with chronic pain have become remarkably invisible, both within the medical profession and in the eyes of the public. And that’s a shame, because women experience chronic pain at far higher rates than men do: Women are 2.5 times more likely to experience rheumatoid arthritis, nine times more likely to develop interstitial cystitis (a chronic inflammation of the bladder) and six times more likely to experience FMS. Just about every form of chronic pain you can think of, women are more likely to experience it. That’s not to discount chronic pain as it’s experienced by men—far from it—but as Kamen points out, it’s an important thing to acknowledge for a variety of reasons.

“[P]utting on an act is fatiguing—and yet another burden,” says Kamen. “In day-to-day encounters, it helps to explain our actions and make actual pain management easier, such as arranging to meet someone in the afternoon instead of the morning [such as when my pain is worse].

“On a bigger level, it leads to great validation of others with invisible illnesses and creates an atmosphere that helps them to live more openly. On an even bigger level, more discussion means that this becomes more of a political issue and doctors and medical researchers then are forced to take these problems more seriously.”

Adds Kamen: “I want to encourage this political consciousness to recognize certain inequities in treatment.”
Here, Kamen is referring to the many studies that have shown that men complaining of the same pain as women patients are much likelier to get painkillers, while women are likelier to get tranquilizers or nothing at all.

Many doctors tend to see all women’s problems as purely psychological, Kamen points out.

“If there, in fact, is any emotional component [such as stress triggering it], they tend to see that as the sole cause,” she explains.

Research revelation

Over the past decade, several research studies have pointed to the fact that women’s bodies actually seem to be more neurologically sensitive to pain and fatigue.

Basically, people with chronic pain and fatigue generally have “overreactive” brains that react strongly to stimuli, Kamen says, “whether it’s stress, weather changes, sleep deprivation [or] hormones.”

While chronic pain cries out for far more research and validation, that pain doesn’t sum up who we are. Neither Kamen nor I feel like we are “weaker” people or less effective writers for having to deal with these struggles and real-life physical challenges. Time after time, we refuse to succumb to the pain of it all and, oddly, we seem to come out the other side feeling stronger for having survived it.

Paula Kamen will be reading from “All in My Head” on July 21 at Elliott Bay Book Company, 7:30 p.m, and again on July 27 at Third Place Books in Lake Forest Park at 7:00 p.m.

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