Humans of ME/CFS

My last two years of high school—1968-1970—I was unwell all the time and in and out of the hospital for tests. At one point, I was diagnosed with esophagitis, later with a severe kidney infection.

During the second year, after a month of headache and fever every day, I consulted a doctor again. He was so sure that I had a terminal disease of the connective tissue that he ran the test five times. Every time the test was negative. I was sent home with a diagnosis of a viral infection—virus unknown—and a prescription for an antidepressant.

So my illness, that years later I came to know as ME/CFS, I’ll say began when I was a teenager. But I had had life-long digestive problems and possibly orthostatic intolerance before that.

My experience with ME/CFS began, however, much earlier than my teens, because mother was ill. Although she was never diagnosed, I have absolutely no doubt that she suffered from ME/CFS. I don’t remember my mother as ever well. She spent much of her time asleep on the couch. At school, I worried about whether Mother was taking care of the baby.

The last few years of my mother’s life were a nightmare. She had aggressive breast cancer (lymphoma, actually) and then was diagnosed with a rare incurable blood disorder, myelodysplasia. And a “fatty” liver” diagnosed years earlier had become cirrhotic.

To return to my own story, my health did improve after high school, and I thought of myself as generally healthy, but in retrospect I realize that I dismissed symptoms and cut back on activities. My circle of friends was smaller than it had been in high school. I didn’t participate in extra-curricular activities. I didn’t respond to the invitation to enroll in Honors College.

The year after graduation from college, from 1974-75, I worked in a factory, and although the job was light packing, it was too hard for me—all that standing. I felt more and more run down. Finally I got sick with a terrible sore throat, aching joints, etc.

Symptoms waxed and waned during the next couple of years. Some days, weeks even, I actually felt ok.

My health declined again when I tried to go to graduate school and after that when I was working as a technical writer.

Then the summer of 1988 I was very ill. Later I would think that I must’ve had hepatitis. I don’t know. One day as I lay in bed, I thought I saw Death sitting at my computer.

Since that summer I have not been well one day.

In 1990 I got a diagnosis of CFS. My health has continued to decline as the years have gone by. Since a major crash in the fall of 2009 I’ve had to spend most of my time in bed. I am now 63 and close to the age my mother was when she died. I hope my life is almost over.