CFS author Dorothy Wall describes a defining moment and the journey it began in her life.

Personal Stories: A “Defining Moments Essay”
From Private Struggle to Public Campaign

By Dorothy Wall, PhD

Sometime in 1989 my friend Susan handed me a short clipping from the San Francisco Chronicle. I have only a vague memory of standing in my yellow-painted entry hall as she fished in her purse, waves of russet-blond hair curtaining her face, then handed me the newsprint.

Her words I remember clearly. “I’ll bet this is what you’ve had.”

I unfolded the column of print and held it to the light. In matter-of-fact prose, the article described an illness newly recognized by the Centers for Disease Control and Prevention (CDC): “chronic fatigue syndrome.”

My attention was instantly focused, as if someone had grabbed me by the shoulders. I read the piece several times, the words cohering until a chill of comprehension slid down the back of my neck. Chronic fatigue syndrome. Could this be what I’d called my “recurring virus”? The one I’d struggled with since that vicious case of mononucleosis in 1978? The one no doctor believed was real?

I stared at the newsprint with a prickle of astonishment and recognition. I’d always known I had a chronic illness, known the doctors I’d seen throughout the ’80s didn’t understand. When I’d asked about Epstein-Barr virus—I must have heard about it in the news—my internist gave an irritated wave of dismissal. “Everyone has antibodies to Epstein-Barr. It’s insignificant.” Not until 1986, eight years into my illness, did I come across a physician who acknowledged with a shrug that there was such a thing as post-viral syndromes. “We don’t know much about them,” was all he had to say.

I scanned the article again. Chronic fatigue syndrome. Recognized by the CDC. Though that name would come back to haunt all of us with this illness, at that moment it was a validation, a lining up of things that had been jangled and at odds. “Huh,” I said.  

We tend to think of defining moments as singular instants of epiphany and insight, and often they are. But just as often the revelation is only partial, the beginning of a slow accretion of understanding or change. Though I realized in that lightbulb moment in 1989 that my health struggle was part of a larger story, that insight didn’t change my life. I was still a struggling single parent, living month to month, with no financial safety net, no medical help. No physician at my HMO could help me with my symptoms or care. I had no money to see someone privately, no energy to do research or become an activist. I couldn’t appeal to family for support. “What do the doctors say?” they’d ask, concerned. And there the conversation would stop, since the doctors all said I was fine.

For the next 18 years my life unfolded, as lives do, as a series of improvements and relapses, new love, a daughter’s graduation and marriage, a book written, a grandson born. Through these years, like a slow and building drumbeat, the steady emergence from isolation has continued, for me and so many others, paralleling the gradual public awareness of the severity of CFS. Thanks to the tireless work of dedicated advocates, researchers and physicians, word is getting out, and in moments small and large, I feel the difference.

There was the amazing day in 2001 when I told a writing client that I couldn’t meet with her in person, that

I worked by phone since I had CFS, and she said, “Oh, I’m sorry to hear that. I know how serious that can be.” Whoa! And the day in 2003 when one of my sisters, after reading an article I sent her, confided, “I always wondered if it was psychological, but now I know it’s not.”
And the day in 2006 when, after answering a slew of e-mails, I realized that thanks to the Internet I was connected to a vibrant, if ill, community to which my life was inextricably linked. I have e-mail friends around the country and abroad who, unfortunately, know first-hand what I’m dealing with. I can download the latest studies on CFS, or bulletins from advocacy organizations working to promote CFS research and education. A public awareness campaign has been launched. A name-change movement is being revived, as is research into the virus/CFS connection.

My defining moment now is a moment like today when I pause to take it all in, draw a deep breath and exhale, a long breath of relief. And then turn back to my keyboard.

In 2005, Dorothy Wall released her poignant and insightful book Encounters with the Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome, blending the personal story of her struggle with CFS with an unblinking look at the realities of chronic illness. Today Dorothy continues to advocate and educate on behalf of all those with CFS and other “unseen” illnesses like Gulf War syndrome, fibromylagia and multiple chemical sensitivity.

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