Thursday, April 29, 2010

People with migraines often hibernate and withdraw from the world


It was a typical entry in Kerrie Smyres’ blog,, not one she would probably consider extraordinary among the dozens of other entries she has made there since 2005. But it stuck with me when I read it, as an example of the revolutionary phenomenon of online openness and sharing about chronic pain.

I’m referring to Kerrie’s Jan. 24, 2008 entry where she wrote about how her head pain that day made her cancel yet another plan she had been looking forward to — this time a cooking class with her husband at Whole Foods. It was hardly a tragedy, she admitted. But it did add to the cumulative frustration of years of missed plans. After all, such minor cancellations remind you of the bigger things you are missing. “Headaches steal so much of your life,” she had written in another entry. “The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity.”

But the Jan. 24 entry was not limited to a personal venting session (although, Lord knows, basic venting has its place). While frustrated, Kerrie, 31, who lives in Seattle, pledged that she will continue to sign up for such classes and resist the urge to withdraw from the world: “Hibernating is way too easy — I know because I’ve been doing it the last few months. I miss being in the world. I probably won’t make all the classes I sign up for, but at least I’ll try. How else can I be sure to enjoy the good parts of life?”

In response, she got many supportive reader comments relieved to know they were not alone in their frustrations. In an interview, Kerrie acknowledged that she gets back more from the blog than she invests in it, in the form of self-knowledge and support from others.

“What I didn’t expect was how therapeutic blogging is,” she said. “When the pain is overwhelming, I no longer lie on the couch stewing in anger.” Instead, she writes about it and figures out how to best cope and move on.

This constructive approach counters the long-standing speech- and activism-chilling stereotype of women who speak out about illness: that they are “wallowing” in it or creating a “pain identity.” The basic message of the growing number of young women blogging about chronic illness — who have just become a significant force only in the past three years or so — is not one of victimhood: It’s to concentrate on what you can do, not what you can not.

This was the opinion of Iraqi-American Loolwa Khazzoom, 38, a dual Israeli and U.S. citizen now living in San Francisco, who has started the new blog, Bloggers like her, she said, are not dictating a one-size-fits all “cure” for everyone, but sharing “our toolboxes” with each other — what works for each person. For her, it’s “dance therapy, where the dance is both literal and metaphoric.”

Loolwa says that her blog gives her the freedom for writing honestly about the complexities of her chronic pain “from a very raw place,” which she wasn’t able to do as a long-time contributor to major women’s magazines. She said her editors there demanded a tidier narrative. Specifically, she felt constrained by a lack of willingness from women’s magazines to critique doctors, which in her case, only made her widespread pain worse, after the head-on car collision she suffered years ago.

Many social forces had to evolve at once to allow “sick lit” blogs such as these to arise en masse. Of course, there is the Internet. And there is the medical technology; many young women also have recently been emboldened by new research legitimizing their health problems, such as advanced medical scans rendering the “invisible” no longer so.

And feminism has a lot to do with it. After 30 years of working to prove that women were strong enough to participate in the world on an equal footing with men, we’re finally at a moment where the women’s health movement — a separate branch of the women’s movement — is able to admit “weakness,” that women are more biologically prone to pain and fatigue and need better treatments for them (something used for centuries to keep them out of public life).

The overall growing openness in our culture, much of it fostered by the women’s movement, is also a catalyst for talking about chronic pain. Younger women grew up being able to come out as gay, and expose sexual abuse and harassment – so why not mention a headache?

The blogs themselves also serve as catalysts for others. Perhaps the most influential is, started in 2005 by Jenni Prokopy, 35, of Chicago. This award-winning blog is probably the “mothership” of them all, setting an upbeat, creative, supportive and even hip tone for the others. She has commented about the generational change in women less willing to blame themselves for their pain.

Jenni had the idea for the site in 1997, when she went online for support as a young woman for her recently diagnosed fibromyalgia. She found some personal Web sites, but they were limited to the “angels and kittens” theme, which basically said “ ‘everything is O.K. because I have a kitten. I love my kitten. And here are like 8,000 pictures of kittens with a blinking logo about kittens.’ People would get a background pattern that would repeat, so there would be a cat head on a doily 50 million times with a prayer. If that works for people, that’s great. But I was really looking for something a little more sassy.”

Jenni was also influenced by the young, feminist D.I.Y. magazine, Bust, first published in the 1990s. Her content, which also includes many guest writers, is also written in a frank, conversational, no-holds barred, brunch-with-friends tone. In fact, the site is unapologetically “girly,” talking about reclaiming the parts in life of “being a woman” that often get lost as a patient, such as a being a girlfriend, wife, and otherwise sexual being. In other words, it’s less “The Glass Menagerie,” and more “Sex in the City.”

Like the other bloggers, she sees this personal conversation as necessary consciousness raising for social change — in the exam room, the workplace, and beyond.

“There are people who want to submerge these ideas, who don’t want people talking about it, who feel uncomfortable with people who are frank and open about their situation,” Jenni said. “It’s really too bad for them and if they don’t want to hear that, they don’t have be around me or other people who choose to accept it. But I really believe that when communities of women, or when communities of people, get together and talk about what they’re going through and share resources and information and ideas, they can bring about change and they can help each other live better.”

Indeed, I don’t take such online exchanges for granted. I know they were not possible just 10 or 15 years ago, when I really needed them, living in the depths of isolation and secrecy with my own ridiculous daily headache. Ironically, back then when I was “in the closet.” I was actually more consumed with and impaired by the pain than I am today. I lacked community support, living examples of people who live with pain, and medical education about the problem.

Now, with some acceptance of the pain, I can better manage my life. And, while significant struggles remain, things are looking up. I just published my fourth book. I’m newly married and, at the age of 40, expecting my first child in July, an opportunity I was convinced in darker times that The Headache would have robbed from me.

Most basically, thanks to many conversations with others, I have learned that acceptance does not mean “giving in” to the headache, but learning to live with how it is in the moment. In the meantime, I still hope and strive for significant relief, such as by visiting the neurologist twice a year to check out the new Big Pharma product roll outs.

Surely, the road will not be easy, but thanks to people like Kerrie, Loolwa and Jennie, I know I’m far from alone in not “hibernating” and withdrawing from the world, but instead facing it.

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