Q: When did you first get sick? How did you come to your diagnosis? Please describe a little bit about the process for my readers.
I initially became ill in 1988. It felt just like I got the flu, except that it didn’t resolve. I remember being very worried that there was something terribly wrong with me. Tests kept coming back negative and I would begin to doubt myself, but then all I would have to do was draw my attention to the aches, chills, tiredness and pain and I would regain my certainty that something was there.
It took four years to get a diagnosis, and I had pretty much self-diagnosed by then and simply sought out a CFS specialist who could confirm my suspicions. I had been to many doctors who wanted to test me repeatedly for innumerable conditions, but were reluctant to, or adamant not to give me a diagnosis of CFS.
Up until the diagnosis, I also experienced doctors who wanted to delegate each of my symptoms to a distinctly separate cause or origin. For example, they said my wrist pain was carpal tunnel syndrome and my blurred vision was age-related. That felt very unsettling to me and my gut knew it was wrong.
Q: What was life like before CFS?
A: I think I had a pretty typical life before I got sick. I was young enough that a lot of my life was yet to unfold and reveal itself, so there was this promise of possibility in each day. I had a great job, but hadn’t gotten a degree yet. I was married to a great man, and we hadn’t had children yet. We had a large social circle and family close by, so there was a lot of hanging out with loved ones.
I guess I had a lot of energy. I remember working through many of my lunch breaks doing some volunteer projects. A friend describes me like a tornado entering a room. My job was central in my life and I socialized with colleagues after hours. I was in my thirties, life was bright, I had many friends and we were buying a house in a lively urban neighborhood. Our quality of life was great.
I was very healthy and always had been … with one exception. When my older sister died in 1979 of leukemia, I developed panic attacks and depression and was put on anti-depressant medications. They did work for me and I had been pretty stable on them for several years when I got CFS.
