It was 12 years ago this month, on 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 thing with such detail all these years later? Because that was the day my life changed forever.
Like Ryan Prior says in his documentary “The Forgotten Plague,” “Most of us know the exact day – the day our worlds caved in beneath us.”
Like Prior, who became sick on October 22, 2006, I awoke that day in 2009 thinking I had been struck by a virus; a hit-and-run infection.
But after not getting better for a solid month, I became frustrated, then concerned, then frightened. Without explanation, my skin became scaly and burned with excruciating eczema (which the dermatologist I saw inexplicably blamed on me). I lost my appetite and dropped a considerable amount of weight in a short time.
Most baffling, though, was the bone, muscle and soul-crushing fatigue, like something had crawled inside of me, died, and was now decomposing, releasing poison throughout and within me. You can read my full story here.
Now, 12 years after first becoming ill with relapsing and remitting ME/CFS, I am just as confounded, frightened, angry, frustrated and despairing as I was after that fateful day in 2009. What I am not, however, is uninformed.
Aside from a veterinary technician license, I have no education or background in medicine, but I feel I have an intimate knowledge of this disease. Not the disease mechanisms, but the devastating effects on the lives of its victims and the conceited disrespect of ME/CFS and its patients by healthcare and government authorities.
Many wonderful books have been written recently about chronic, mysterious maladies. In recent years, I’ve read and re-read numerous memoirs, novels and informational texts. Also, support groups on platforms like Facebook have greatly helped me and many, many others feel less isolated.
Isolation is one of the most brutal traits of chronic illness. Even with the Internet, most of us still feel unimaginably alone. Some of us never go into remission – lives ground and jolted to a permanent stop.
"My hope would be that as we study long COVID, and look at those comparisons with chronic fatigue syndrome, we'll learn a lot about both of them," NIH Director Dr. Francis Collins told members of Congress last spring. “Because there's lots and lots of people with chronic fatigue syndrome who are still waiting for something that's going to help them."
I can only hope, in the months and years to come, that Collins’s words will endure.
–Bridget O’Shea