It was 12 years ago yesterday, October 5, 2009, when I woke up and quickly realized I had come down with a flu or something. Why do I remember such a mundane detail all these years later? Because that was the day my life changed forever.
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.
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.
When I hear the word ‘controversial’ being used to describe ME/CFS, it always sparks anger in me. I don’t like my poor quality of life being ‘controversial.” I want my poor quality of life to be cured. This word also conjures thoughts of delayed research and, subsequently, delayed treatment, like the controversy is what happens while we remain sick.
It is now September, 2021 and I’ve decided to use this time in remission to put my energy into stopping the neglect of this devastating illness and get government institutions to properly fund research. I think the way this disease is currently treated is unacceptable. My story began, like most, with a viral infection that would not go away. It seemed to leave my body wounded on a cellular level. I felt, literally, like I had been poisoned.
