Why did it take a decade of frustration and uncertainty?
I went for many years thinking I was alone in my illness. I thought I was mostly alone in my anger, confusion and despair. Occasionally I would read something about ME/CFS patients who were furious about the lack of treatment and I felt a kinship with them. Then I would go into remission. Whenever my illness came back, this lonely, confounding situation presented once again.
What was this thing that made my body feel like it was dying?
I realized that although I may be somewhat alone in my anomaly, I am not alone in my illness.
I first got sick in 2009. It was ten whole years before I learned of the true extent, severity and seriousness of my illness. Yes, I knew that something was horribly physically wrong with me, but my understanding of my situation didn’t make sense until I read Hillary Johnson’s “Osler’s Web” (1995). It was there that I learned the complete recent history of the disease and the true extent of the ignorance surrounding it. Riveted, enraged and astounded, I devoured that book like it was a holy text.
That it took me an entire decade to learn the details, history and other vital aspects of my own illness is unacceptable.
My experience with this disease has literally changed the way I see all things. Almost all new information now goes through a thick filter of cynicism. It has tattered my sense of trust far beyond just in matters regarding my health.
Today, if you Google ME/CFS, you’ll get a lot of information (some good, some bad). Despite the growing validity of the science behind the disease, it is very dismaying to go into Facebook groups and see the frustrations and despair that continue to plague patients. Dismissive doctors, callous family members, friends who don’t listen, recommendations of folk remedies, lab results that offer no clues.
How can something that feels so awful; so devastating and crippling go unseen for so long? The prime answer is funding. The disease, just like its victims, has been silenced and abandoned. Please help me in working towards changing this.
—Bridget O’Shea