Chronic Fatigue Syndrome author, Dorothy Wall, shares her CFS story and how there was a defining moment in her illness where everything changed for her and her life. Here is an excerpt from her story that you can read at this link on the CFIDS Association website:
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 didnt 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 couldnt appeal to family for support. What do the doctors say? theyd 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 daughters 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.
Dorothy Wall is an inspiring face in the fight against CFS. She has written a great book on CFS that you can find at the link below: